This topic contains 183 replies, has 28 voices, and was last updated by  Andrew (Randy) Hicks 1 day, 10 hours ago.

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  • #11117
     Charlene Marshall 
    Keymaster

    Hello Forum,

    With only two widely known anti-fibrotic medications available to treat Pulmonary Fibrosis, a question that often remains on the minds of patients is why their Doctor chose to prescribe one over the other. For those of you using this forum who are actively taking Ofev, I’d love to hear from you! Please share your answers to the following:

    • How long after your diagnosis of PF/IPF did you start taking Ofev?
    • When you started Ofev, had your Doctor shared with you whether your PF/IPF was mild, moderate or severe?
    • When being prescribed Ofev did you ask or did your Doctor offer to explain why they chose this drug over Esbriet?
    • How long have you been on Ofev?
    • Can you outline some side effects you have experience as a result of being on Ofev?
    • Do you have PF (with a known/suspected reason for the disease development) or IPF?

    Thank you for sharing your experiences with Ofev. In many social media platforms for PF/IPF, a lot of discussion is generated about the use of Ofev, including inquiries about side effects, costs and why this medication over Esbriet. This forum is an excellent tool to continue those discussions, and I hope you’ll join us!

    Sincerely,
    Charlene

     

  • #11118
     Bill 
    Participant

    I was diagnosed with IPF in Nov, 2016.  Early stage.  Wife complained about my coughing and brought it to the attention of my doctor.  He listened to my lungs and heard the “saran wrap” sounds and sent me to pulmanologist who did all the scans, etc and diagnosed me with IPF.   The doctors who attended my brothers and mother all claimed there is no “familial” indication…. kinda makes me wonder what it takes to become “familial”….

    My mother and 2 brothers were also diagnosed with IPF. Two passed in their mid 50’s and one brother in mid 40’s.

    I went on OFEV in January 2017.  Side effects are dramatic, if you don’t take it with a meal!  I always make sure I have food when taking it now, otherwise vomiting and nausea.  Occasionally will have some diarrhea or cramping, but not bad.

    My 6 month and 12 month check ups have shown no progression in the lungs, nor in lung function tests.   So far, so good.

    Dr suggested OFEV because more convenient (fewer pills and less often), as well as other patients having experienced fewer or milder side effects.

     

    • #14989
       Pauline Sizemore 
      Participant

      I was diagnosed with IPF in Feb. 2015. I was prescribed Ofev while I was in the Hospital after admitted into the hospital with pneumonia on Dec 31st 2014. ( ground glass they told me). After having a lung scan with radiation where I was injected and inhaled it for the scan. After 6 days I went into respiratory failure. I was taken off the respirator on Jan. 15th. I’m M still blame the radiation for scarring my lungs or it could have Ben the ground glass-like bacteria.i was released from the hospital after a lung biopsy which was then diagnosed with IPF. After going home that night I woke up with a 102 fever and was admitted back with pneumonia. The critical care Pulmonologists immediately prescribed Ofev to take 150 mgs. X2 daily and 2 liters of oxygen 24/7. I was finally transferred to inpatient nursing and rehabilitation for 20 days. My oxygen needs went up and down. I have been taking Ofev for almost 4 years with no real side effects and my medicare part D pays the $8000. My last lung function and other tests confirmed my lungs to be almost normal and I am finally off supplemental oxygen during the daytime hours. I even went to a pumpkin farm with my family and walked all over without it. Of course I had my trusty rolling Walker with me due to a recent spine surgery. So this is a success story of the benefits of Ofev. Thank God.

      • #14994
         Charlene Marshall 
        Keymaster

        Hi Pauline,

        Thank you so much for writing to us and sharing a bit about your experience, although I am so sorry to hear of everything you’ve been through. That sounds like such a tough time for you! Contracting pneumonia absolutely terrifies me for many of the same reasons that you experienced, so I am very cautious about being around people at this time of year. That said, I know it can still happen to anyone even those who are so cautious. I am so glad to hear you’ve rebounded a bit in terms of your ability to be off supplemental oxygen and that your medicare pays part of the astronomical part of this drug costs! I hope you had a wonderful time at the pumpkin patch with your family, and that your recovery from your recent spinal surgery continues to go well!

        Thanks again for sharing, your story really gave  me a lot of hope as someone who is on OFEV for IPF!
        Warmest regards,
        Charlene.

    • #19179
       Tony Buxton 
      Participant

      Why don’t you buy from India online. It’s made by the same people Boehinger under the generic name pirfenidone. They send it by EMS for $20 and you should get it within a week. I don’t think there’s any problem in importing medicine for your own use and many in the US use Canadian online pharmacies, which simply source all their supplies from, India, and charge 10 times the price. Many Indian suppliers will accept PayPal, which guarantees genuine suppliers. You can bargain with them and probably get the price down to $0.30 a tablet

      • #19196
         Charlene Marshall 
        Keymaster

        Hi Tony,

        Thanks so much for sharing this information and reminding folks of this option. At first I was very skeptical of it, but I’ve heard of a few people (outside of the forum) doing this who are very well educated, spoke to their doctors and did their research, who are also ordering the Ofev tablets from India. Something to consider for folks for sure. I’m sure this post will be helpful to many of our members, thanks again for taking the time to share it.

        Regards,
        Charlene.

         

         

         

  • #11121
     Charlene Marshall 
    Keymaster

    Hi Bill,

    Welcome to the PF forums, and thank you so much for sharing your experience with Ofev in this forum topic. I know readers will find it very helpful!

    If this isn’t too personal of a question, was your cough a dry cough or was it productive? I often wonder this as people can differ significantly in hour their symptoms appear for PF.

    On the note about familial IPF, I also wonder (and actually, just wrote about this on the forum…) what criteria it takes for PF to be considered ‘familial”. I wondered if it was the number of family members diagnosed, or if it was a certain type of family chain (ie. all females on the maternal side, as an example)… I’d really like to learn more about familial PF, as I worry about future generations in my family now. Maybe I will post this question to the Research and Development group to see if anyone there knows.

    I really appreciate your sharing, and I thought maybe physicians started approving Ofev for patients due to the convenience, ie. less pills. I’m so glad to hear that your 6 and 12 month check-up went well without any progression as well. I hope this continues for you!

    Cheers,
    Charlene

  • #11872
     Jean Benford 
    Participant

    I am newly diagnosed and my Dr. wants me to start OFEV. Are any of you receiving financial help for the copay? My copay after insurance is $2300 per month. I have applied several places and they say we make too much money. I am waiting now to hear back from the drug company itself now.

    • #11879
       Charlene Marshall 
      Keymaster

      Hi Jean,

      Thank you for joining the PF forums and contributing to this thread!

      I am on OFEV, but I have found that most people on our forums are actually taking Esbriet as opposed to our anti-fibrotic medication. I am also located in Canada so I know our drug benefit rules differ significantly than the US. Have you looked up compassionate coverage options? I don’t know if the US honors this, but oftentimes drug companies themselves will accept letters from patients and consider paying their drug costs based on compassionate reasons, which I don’t think are income-based. Might this be something worth a Google search about, to see if it might apply for you?

      Otherwise, you could ask your same question in our Esbriet forum to just obtain information about co-pay from other patients taking anti-fibrotic medications for PF? I know it might differ between the two drugs, but perhaps someone has a lead to consider that has worked for them. Not sure if this is helpful? I can post your questions to our social media platforms (ie. Facebook and not share your name) anonymously too if you’d like? This might generate more answers for you regarding medication co-pay for OFEV.

      Let me know and I’d happily do that for you!

      Warmly,
      Charlene.

      • #17846
         Tony Buxton 
        Participant

        Pirfenidone is an alternative. Buy online from India its genuine and $0.25 cents.

      • #17859
         Charlene Marshall 
        Keymaster

        Hi Tony,

        Yes, you’re correct – Pirfenidone (or Esbriet, generic name) is another anti-fibrotic drug used to manage IPF although there are noticeable differences in the drugs and why a doctor might use one over the other. While the goal of the medication is the same for both, different side effects or drug interactions with unrelated medications can occur. Whenever possible, it’s important to discuss these with your doctor but yes, I’ve heard if you are prescribed Esbriet and cannot afford it in North America, I do know a few folks who have bought it overseas. Thanks for sharing this resource!

        Charlene.

      • #19141
         A. Houghton 
        Participant

        Hi Charlene,

        In your response to Jean Benford, can you also keep me in the loop?  We can’t afford the monthly cost of this medication.

        I will take your suggestion and check with the drug company.

        Thanks, Charlene, for all your help.

        Catherine

         

         

    • #21215
       Patricia Williams 
      Participant

      As regard to the Dr prescribing Ofev, my Dr told me the side effects of each and let me choose which one I preferred.

  • #14004
     Jacki Baum 
    Participant

    I was diagnosed with IPF in May, 2017 and began takin OFEV in February of 2018, and had only mild side effects for the first 2 months.  Then I developed   nausea,  diarrhea and at times secere vomiting.  I took pills for the nausea and diarrhea which helped, but then I was  constipated so i had to deal with that.  I was pretty much housebound for almost 2 months, and i am an outdoors person, golf, pool, walking, etc.  My doctors were working with me but nothing seemed to work.  So on August 10, My dosage was reduced from 150mg twice a day, to 100mg twice a day.  I now am back to normal, no side effects, and feel good.  In time they will up my dosage but for now I am good!!  Back to golf and walking, I feel like i got my life back.  I was perscribed OFEV because I live in South  Carolina and am in the sun a lot.  I am over 65 and have a perscription drug plan, my first perscription put me in  catastrophic so they pay $8,650 and I applied to a foundation for assistance and they gave me a grant that pays the rest.  I learned about this foundation through the Open Doors, I was not sure i would qualify, we are quite comfortable financially.  I know I will have to reapply again next year.  I am in the early stages, my PFT are “normal”, I do not cough, I can walk up a hill, but I know this will not last.  My father died from PF, but they call mine IPF, as far as I know, no one else in the family has it.  I know I jumped all over the place writing this forgive the rambling.

     

    • #14010
       Charlene Marshall 
      Keymaster

      Hi Jacki,

      Thanks for connecting with us and sharing your experience regarding OFEV on the forums. I know others will find the information you’ve shared helpful as I have, and welcome again to our forums. So sorry to hear about your IPF diagnosis though, it totally stinks that it is this cruel illness that is bringing us all together.

      I’ve actually heard of quite a few people not being able to tolerate the 150mg dose and needing to reduce it to the 100mg due to unpleasant side effects. A lot of those people then talked about how the side effects subsided with the dose reduction. It sounds like this was the case for you as well, which I am glad to hear! I hope the eventual slow increase in dosing doesn’t bring back the side effects as well, and so glad to hear you are enjoying your outdoor hobbies once again.

      I haven’t heard of Open Door, is this a state-specific resource or nation wide? Just curious as I am sure other Americans would be interested in learning more about this. I sure hope your IPF remains stable for a long time Jacki, and wishing you nothing but the best. Please don’t hesitate to connect with us, we all truly “get it” on these forums!

      Take care,
      Charlene 🙂

  • #14006
     Dick 
    Participant

    I was just diagnosed last week with IPF & seeing my new Dr. this week – I have been doing quite a bit of research & would like to know if anyone has information on how to get financial assistance for either OFEV or Esbriet, or is this something you talked to your doctor about – I work for a University, a state job, but they do not cover these two medications & the price for either would break the bank – thanks for any insight.

    • #14011
       Charlene Marshall 
      Keymaster

      Hi Dick,

      Thanks for joining our forums, and welcome once again. So sorry to hear of your recent IPF diagnosis, and I hope meeting with your new doctor next week goes well. I remember how many questions and queries I had following my diagnosis, so I hope you’re able to write things down to get everything answered that you are wondering about.

      I am Canadian so unfortunately our drug costs differ greatly from the US and I don’t have much insight to provide on expense coverage. However, I suspect lots of other people will so it is a great question. I’m glad you were able to get some information from Jacki, and if you do a forum search by typing in the key word “costs” (top right-hand search bar) you will likely get previous information that has discussed this pulled up for reference. Let me know if I can be of any further assistance!

      Also, definitely ask your doctor about this too as there may be state-specific details where you live that they are aware of, or could do some researching for you. You may not need to start on anti-fibrotics right away either. Do let us know how it goes if you feel up to it afterwards. Take care, and I look forward to getting to know you a bit more through our forums!

      Warm regards,
      Charlene.

      • #21216
         Patricia Williams 
        Participant

        My physician referred me to Open Door. Please check on this. I get my med mailed to me every month. A nurse calls to check on me every month and then she transfers my call so I can set up when I want it delivered. Please check with your Dr about this.

  • #14007
     Jacki Baum 
    Participant

    Hey Dick, I am over 65 so I have a perscription drug insurance, but the support group called Open Doors that my doctors put me in touch with worked with me.  My insurance covered most of the cost but I was given the name of two foundations that help people off set the cost of drugs,  the one I used is Health Well Foundation, phone # 800-675-8416.  The other foundation is PSI Foundation phone #800-366-7741.  Open Doors, a Patient Support Program for people taking OFEV is a great support. Their number is 866-673-6366.  Hopes this helps

    Jacki

  • #14009
     Dick 
    Participant

    Jacki, thank you very much for the info.

    • #14013
       Charlene Marshall 
      Keymaster

      Yes Jacki, thank you so much for sending all of this through! This is really helpful information for people in the US taking OFEV, I am confident others will find it helpful. I really appreciate the time you took in sharing the details of the foundations and programs that helped you 🙂

      Take care,
      Charlene.

    • #19142
       A. Houghton 
      Participant

      Thank you, Jacki, for this valuable information.

  • #14038
     Dick 
    Participant

    Thanks Charlene for the response. If I find anything new out about the two meds in question, I will post asap. Take care.

    • #14051
       Charlene Marshall 
      Keymaster

      That would be really great Dick, thanks so much!
      I hope you’re having a great day, and thank you for being part of our wonderful forums community.

      Kind regards,
      Charlene.

  • #14053
     Patti 
    Participant

    My mother just started taking it about two months ago. She was diagnosed a year ago, but we suspect she’s had it longer. Luckily her IPF is progressing very very slowly. Her doctor prescribed it to slow the progression even further. He suggested Ofev over esbriet simply because it was one less pill to remember to take – he said esbriet is 3 a day.

    We were very concerned about the reported side effects, but she hasn’t had any what so ever. She ALWAYS takes it with a meal – one with breakfast and one with dinner. No nausea or stomach upset of any kind!

    She and I were both a little nervous about the drug, but so far it’s been a positive experience!

  • #14054
     Charlene Marshall 
    Keymaster

    Hi Patti,

    Thanks so much for getting in touch with us and sharing a bit about your Mother’s experience with OFEV. My doctor also prescribed this drug over Esbriet for the same reason, it is less pills to remember to take and I am not always the most compliant patient at medications because I used to be so busy and active, before IPF slowed me down of course. Sometimes Esbriet can be 9 pills a day (3 pills x 3 times per day) and there was no way I’d remember all of those, Lol!

    So glad to hear your Mom isn’t experiencing the stated side effects, that is great news. I also take my pills with a meal and it seems to help. Sometimes I get nausea from time-to-time but thankfully it is short-lived and doesn’t last very long. Really glad to hear it has been a positive experience overall for your Mother. She sounds very lucky to have you 🙂

    Kind regards,
    Charlene.

  • #14684
     Patricia Anne Hughes 
    Participant

    I,ve just started OFEV and suffering sickness etc. Really bad dry cough which is the worst symptom. Also recently started supplementary  oxygen. We seem to be fortunate in the UK where the drugs and oxygen are free ( although of course pre-paid the compulsory national health insurance contributions of a few pounds a week throughout my working career) Even so the UK health service is free when needed to all and sundry, even though it’s poorly resourced by government.  Too early to comment on the effectiveness of ofev to date. My first diagnosis of ipf was back around 2010 with little actual treatment until now, so it would appear the problem is progressing very slowly.  However the constant coughing which started around a year and a half ago  is really debilitating

    • #14689
       Charlene Marshall 
      Keymaster

      Hi Patricia,

      Thank you so much for writing to us, although I really wish your experience with starting OFEV wasn’t this unpleasant. How terrible for you! Did your doctor offer any type of anti-nausea med to help manage the sickness with this drug? What about pairing it with gravol to help with the nausea?

      Do you feel like the supplemental oxygen is helping with the dry cough? I know this is such a pesky side effect of IPF. Here are some replies from others on the forum about different ways to address the dry cough: https://pulmonaryfibrosisnews.com/forums/forums/topic/unusual-cough-relief-patients-pulmonary-fibrosis/

      I hope you find some relief from this cough soon Patricia. Hang in there, and please feel free to write any time!

      Kindest regards,
      Charlene.

  • #14973
     Brian Thomson 
    Participant

    I was diagnosed with I.P.F.in March of this year,next Thursday I wii be receiving my first supply of O.F.E.V.I have read about the side effects of this medication but I am willing to try what my Dr.advises me too.I am from Canada and the govt.will cover the cost of my meds.I have such great family and friends support so here goes.Thank you all for the information I wish you all the best.

     

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    • This reply was modified 10 months, 3 weeks ago by  Brian Thomson.
    • #14991
       Charlene Marshall 
      Keymaster

      Thank you so much for contributing to this topic thread Brian, and sharing a bit about your experience. Sorry to hear of your IPF diagnosis this past March, but I am glad you’ve found us and this forum for information that might be helpful to you. I am also from Canada and on OFEV, my experience with adjusting to it has been quite positive and very free of side effects, which I am so thankful for. That said, I haven’t had my liver function tested since going on it and I know I should do this after hearing about others’ experiences on this drug.

      I am so glad to hear you have such great support among your family and friends, this is wonderful news! Wishing you all the best too, and please let us know (if you want to) how the start of OFEV goes for you. I’ll be keeping my fingers crossed that it goes well!

      Charlene.

  • #14997
     Steve Dragoo 
    Participant

    Hi to Charlene, Jean, Dick and et al.

    I was diagnosed May this year but believe I had an onset of basic symptoms February 2017 when antibiotics did not heal my “pneumonia” while in the Philippines.  At a 6-month follow up last week my pulmonologist suggested I start esbriet and after reading the helpful comments here I may do that but certainly curious which is better for IPF.

    To help with the huge cost, if any of you served in the military get set up with your local veteran’s hospital.  The care is similar to a HMO so it takes a little while to figure out the system (if anyone has questions I am glad to answer what I can about the VA system) but prescriptions are incredibly cheap based on income.  I read recently a large research grant for PF is either done or in the works – there may be some assistance money available, also contact the PFF to see what they can suggest. Here is their website:  https://www.pulmonaryfibrosis.org/ . There are other associations related to this disease such as IPF foundation, Patient support&resources but I know nothing about the last two.

    Hope this will help you.  I am naturally curious which is better esbriet or ofev.  Success in healing and blessings.

    SteveD

    • #15006
       Charlene Marshall 
      Keymaster

      Hi Steve,

      Thanks so much for sharing your experience with us! I unfortunately can only really contribute to the benefits of OFEV that I’ve found, as I’ve never been on Esbriet for my IPF.. not yet anyways. Did your pulmonologist recommend Esbriet over OFEV for a specific reason, or more likely because it is used more frequently for IPF (from the sounds of it, anyways)? This would be a good question to ask him: why he suggested this anti-fibrotic ahead of the other one.

      That is really helpful information for others about the veteran’s hospital, and the cost of cheaper prescriptions. I know others have chatted about the benefits of the VA which is great news for those who are eligible. I am in Canada, so please excuse my misunderstanding if they aren’t the same thing. There are a few amazing grant programs out there to help with the cost of medications. I am currently on a compassionate care grant actually, which has been helpful in covering the difference of what our Canadian health insurance doesn’t cover of the OFEV. Goodluck to people looking into this, it can be frustrating but definitely beneficial with persistence.

      If you find out the answer to your curiosity Steve, in terms which anti-fibrotic might be “better” than the other, please let us know. I suspect it will come down to the type of PF someone has, including the progression, other medication interactions, etc. Enjoy your day and thanks for writing!

      Warm regards,
      Charlene.

      • #15012
         Patricia Anne Hughes 
        Participant

        Hi,

        my wife started OFEV recently but unfortunately had to stop due to an adverse affect on her liver. She is now about to start on Esbriet instead to see if that’s any better. We are advised that whilst both drugs apparently serve the same purpose the Esbriet is a little easier  to monitor side effects in the early stages in so much that you ease yourself into the drug and increase the dose over a period of weeks, whereas with the ofev you are immediately on the full dose from day one. Fingers crossed that she does not experience liver problems with the Esbriet.

      • #15049
         Charlene Marshall 
        Keymaster

        Good morning,

        I have been thinking about your wife a lot and hoping she is managing each day as well as possible. I also hope that as her caregiver, you’re being gentle with yourself and your needs too. Caregiving is such a tough role for those living with IPF! When does your wife start the Esbriet? Please let us know how she makes out.

        That is really interesting what you shared about Esbriet being easier to manage the onset of early side effects because it is a gradually increased dose whereas OFEV is started all at once. This makes sense to me, for sure! Thanks for sharing that, and I  hope your wife manages alright with the side effects of Esbriet, especially with her liver numbers. Please keep us posted!

        Charlene.

  • #15008
     Steve Dragoo 
    Participant

    Thanks Charlene – I emailed them and I am sure she will call as always before.  – SteveD

    • #15048
       Charlene Marshall 
      Keymaster

      Great, thanks for letting us know Steve. If you find out anything really helpful, in terms of which anti-fibrotic is best or if it varies based on circumstance, please do report back and let us know. Really glad you have such quick access to your team. Goodluck! 🙂

      Charlene.

  • #15114
     Scott Felland 
    Participant

    In response to your inquiry about OFEV, Charlene, I would like to mention a couple of things. In March, 2015, my pulmonologist chose to prescribe Esbriet for my IPF for a couple of reasons. Both drugs had only been recently approved in October of 2014, and the UW Hosptital had participated in the trial leading to the approval of Esbriet, so he was more familiar with it. Also, he felt the side effects were less than with OFEV. Both drugs have similar outcomes for the patient, yet approach the disease differently. For those that have concerns with taking 3 capsules 3x daily, Esbriet also comes in a somewhat large tablet form that is taken 1 tablet, 3x daily. I have found that both the caps and the tablet HAVE to taken with food to avoid nausea, but the tablet requires that I have consumed some of the meal already  to avoid nausea.

    Now, leading to my question. Since, as of late, my PFTs have been declining a little more rapidly than expected on Esbriet, I have asked my pulmonologist about the possibility of combing both the Esbriet and the OFEV since they do both approach the disease in different ways. There has been a study to determine the compatibility and , as expected, both had similar side effects as they would if taken separately. At first apprehensive, my doctor is willing to try that, however, being a new approach to treatment, the dosages are unknown and, quite importantly, the insurance coverage is doubtful for both. I am presently receiving Esbriet for free from the manufacturer, Genetech, but next year, I fear that I will become ineligible due to income. UW Health has arranged the grant for me.

    Now, my question. Is anyone in the forum happen to be taking a combination of the two drugs?

    • This reply was modified 10 months, 2 weeks ago by  Scott Felland.
    • #15148
       Charlene Marshall 
      Keymaster

      Hi Scott,

      Thanks so much for getting in touch regarding this and providing clarifications into my inquiry. That makes complete sense why your doctor started you on the Esbriet first, having been involved in the development of the drug/trials and being more familiar with it. Makes sense as well about the convenience of taking a larger dose of Esbriet for those concerned with taking the 3 tablets 3x daily. Glad you sorted out how best to take it to avoid the ill side effects like nausea.

      Wow, I hadn’t heard of any studies or doctors prescribing both the anti-fibrotics together. Your doctor is willing to try this then? Sorry, I didn’t know for certain based on your reply as I know you mentioned he / she was apprehensive about it at first. Sorry to hear your PFTs are declining and I hope this new medication adjustment helps.

      I don’t know / haven’t heard of anyone taking both medications at the same time but if anyone on this forum is we’d love to hear from you!

      Thanks,
      Charlene.

  • #15405
     Karl 
    Participant

    Hi all, I was diagnosed with mild IPF 3 months ago. I am not on oxygen …. yet, and I get around quite well on my own. I’m 81, galloping toward 82, active, working at my third career. As I began reading about people who had IPF for many years I discovered one gentleman was diagnosed 17 years ago. This helped me overcome my initial anxiety.

    I’m into my second month of 150 mg Ofev taken twice a day, 11 to 12 hours apart, with meals. I had trepidation about taking Ofev because of reading what many people said about the negative side effects. It took me some time to commit because I’m a foodie. I love all kinds of food from common things to the exotic. I love trying different cuisines. I considered myself to be one with an iron stomach; I can (could) eat almost anything without adverse effects. And I love spicy foods.

    I also love the outdoors and the sun in particular. My past includes a stroke, bladder cancer and melanoma. I have a very positive attitude which has helped me survive all and I consider myself a very lucky man. But the melanoma made my decision to reject Espriet easy.

    I decided not to alter my foodie preferences in the beginning to see how I would respond and have had relatively minor side effects so far. I understand taking either drug probably prolongs life but it’s certainly not guaranteed. For those trying to decide, I suggest you give whichever drug you favor a chance. You can always reduce dosage or even quit. Stopping or reducing dosage is always an alternative, for me and for you.

    I believe positive attitude is the elixir for all maladies.

    • #15419
       Charlene Marshall 
      Keymaster

      Hi Karl,

      Nice to hear from you and thanks for writing and sharing a bit about yourself. Welcome again to our forums!

      I always love to hear the stories of people who have been living with this disease a long time, similar to the gentlemen you’re referring to who has IPF for 17 years. It sure gives us a lot more hope, doesn’t it? There is someone on the PF News Facebook page (not sure if their part of the forums yet or not) who has had IPF for 22 years. They say they are “slowing down”, but still living a life they are happy with which is important. Really glad you’re doing so well, and kudos to you to still be working at your 3rd career. How neat is that!

      I also love the sun and warm weather (which is funny since I am from Canada and it is wicked cold here right now) so going on Esbriet was a worry for me too. That said, my doctor actually never suggested Esbriet, he thought Ofev would be the better choice for me so I have been on that medications, without many side effects, thankfully. What a tough past you’ve had, it sounds like you are dealing with it head on though and with such a positive attitude. That is so wonderful to hear! Also really glad to hear taking the Ofev is going well for you, I’ll keep my fingers crossed that this continues for you and wishing you nothing but the best.

      Keep that positive attitude going, I also believe it contributes to so much of our ability to cope and manage this disease. Thanks for that important reminder!

      Regards,
      Charlene.

  • #15438
     Kenneth Corsette 
    Participant

    I was diagnosed in Jan 2016 and started on IFEV  in July of this year after a lung function test showed I had declined 13% since the last one. The doctor suggested IFEV because the wife and I spend 3 months in Yuma Az every winter and Esbrite had a warning about being in the sun. I have not had any side affects so far. As to it helping I will find out at my next function test in Jan.

  • #15442
     Charlene Marshall 
    Keymaster

    Hi Kenneth,

    Thanks so much for sharing a bit of your experience with Ofev, and welcome again to the forums! I am just curious, as I know the disease progresses so differently in each of us: how long had it been since your first lung function test, and the one that showed a 13% decline? I am trying to get a sense of whether my disease is progressing fast or slow, so hearing about others’ experience really helps me. Really glad to hear you haven’t had any unpleasant side effects and can still enjoy the AZ warmth and sunshine. I’m finding Ofev quite tolerable for me as well, which is nice 🙂

    Take care,
    Charlene.

  • #15447
     Steve Dragoo 
    Participant

    Hi Charlene – I asked my doctor the stage and speed of my IPF and she commented when I do my next test in January she will better be able to answer that one.  Obviously, we want to know that as it will determine if and when I return to the Philippines.

    Glad to hear Ofev helps you.  Now would be a good time to be in AZ!  LOL – Happy successful week to you (all) – Steve

  • #15454
     Charlene Marshall 
    Keymaster

    Hi Steve,

    Couldn’t agree more with you re: being in AZ right now! I am sitting in my room listening to the wicked howl of the wind outside, knowing our ‘low’ temperature tonight is supposed to reach -12 degrees celsius! What is the weather like where you are right now?

    Keep me posted on the status of your tests in January if you wouldn’t mind, and what your doctor says about the stage and speed of your IPF. I will be keeping my fingers crossed that it is good news, enabling you to return to the Philippines as soon as possible!

    Thanks for writing, as always, it is great to hear from you!
    Charlene.

  • #15462
     Bob 
    Participant

    @Charlene Marshall

    Hi Charlene:

    I hope this post has more success than I have experienced to date.  This is really intend for Steve Dragoo on his query about combining OFEV and Esbriet.  Here are the results of a study done on this topic and it indicates that combining the 2 drugs is safe.  It does not comment on the effectiveness or otherwise of the combination but a note to Pulmonary Fibrosis News could determine if their has been a study along these lines.  There has been no mention of the cost of combining but it is likely to be very very high.

    Ofev-Esbriet Combo Is as Safe as Individual Components as a Pulmonary Fibrosis Therapy, Trial Indicates

  • #15463
     Steve Dragoo 
    Participant

    @Bob

    Thanks – I can just hear insurance companies and the US VA Hospital system now. – You want us to spend how much on you each month and there is no clear efficacy???  Assumedly a combined pill would be good but that probably has too many patent problems.

    Healthy lifestyle (food, rest, water, exercise – think NEW START program) and stress removers seem a better option.  It would be good if there were clear studies on essential oil(s) and herb supplements for ILD or IPF but they seem a little too vague for now. I have a friend who was a successful Orthopedic Surgeon but left the business because he discovered the right foods are a better option.  He is known for saying, “Food is for living people; pills are for dying people.” He has a point…

    Appreciate your time and response…

    SteveD

     

    • #15491
       Charlene Marshall 
      Keymaster

      Hi Bob,

      So great to receive your message, it looks like you’ve figured out the forums and that the technical difficulties are out of the way! I know how frustrating that can be, so I am really glad you’ve stuck with us as it’s great hearing from you.

      I really appreciate your taking the time and diligence to follow up with Steve’s query on Ofev and Esbriet, combined. I’m sure he will as well, and I’m glad he replied back to you. I had read since this topic had come up that the combination is safe, but its more that doctors really don’t endorse the two being used together by not prescribing them. This could be an assumption on my end, I just haven’t heard of a doctor offering both to a patient, have you? I’d be curious to know. I agree with you, and imagine the cost would be very, very high as well!

      Maybe I’ll ask our researchers on our science team through PF News to see if they can find any studies where the two anti-fibrotic drugs have been used. I’d be interested to know as well!

      Thanks again for writing, and so glad you’re here!
      Cheers,
      Charlene.

    • #15493
       Charlene Marshall 
      Keymaster

      Hi Steve,

      I know your reply was to Bob, but I just wanted to say thanks for all the information about possible alternatives for those of us with an ILD/IPF. I think of your friends comment often, the “food is for living people, pills are for dying people” when I am preparing my meals and making healthy food choices. Generally I eat well anyways, but this little phrase pops into my mind when I am meal planning and I am grateful for that.

      I also would really like to see some concrete studies on essential oil use, they’ve been around for so long and people claim much success with them that it’d be nice to see some real studies conducted. For now, I keep trying to plug through with as little medication as possible, and as much healthy / wholefood options as I can.

      Wishing you well!
      Charlene.

  • #15464
     Bob 
    Participant

    @Steve Dragoo

    I got an article from Pulmonary Fibrosis News this morning. (you can sign up to receive these daily on their website).  They are testing a herbal concoction on mice that is showing some positive results. Stay tuned.

    By the way i’m not sure they would ever have a combined pill.  You’d probably have to take your 2 OFEV and your 3 Esbriet.  I’m in Canada but winter in Florida.  I’d need another bag to carry my supply.

    • #15492
       Charlene Marshall 
      Keymaster

      Hi Bob,

      I didn’t know you were in Canada – I am as well! Welcome to another fellow Canadian, and I am super jealous that you enjoy winters in Florida. Good for you! 🙂

      Take care,
      Charlene.

    • #15500
       Steve Dragoo 
      Participant

      @Charlene

      I am glad you remember that food/pills comment and our “friend” comment. Friend me on FB if you want.  I first heard food/pill comment from my friend years ago and it has stuck because it is accurate. Here is his most recent newsletter (which you can sign up for if you want). This particular letter is pretty deep and usually, he and his wife have healthy nuggets in their news – you can go to past news at the top.   http://northernlightshealtheducation.com/newsletters/NewsletterNOV_30-2018.html?fbclid=IwAR0S2Pdn87NsXwa93ujRwkeGc4GO1EJLqe_xm6N5XF75g-AZhuk8z2uR-C4

      I avoid all meds I possibly can because they all seem to have side effects – some pretty unpleasant so I don’t see that improving the quality of life and frequently cause you to take another med for that unwanted effect – nasty spiral.

      Stay warm… – SteveD

       

      • #15504
         Charlene Marshall 
        Keymaster

        Hi Steve,

        Thanks so much for getting back to me! It certainly does make sense re: food vs. pills. I have always disliked taking pills, even when I had a headache as a youngster, my Mom said I’d fight her on taking medications. Now I certainly don’t like taking anymore than I have to, and am really interested in more natural remedies as you’ve mentioned and listed in previous postings. It sure can become a nasty spiral as you say, and one I certainly don’t want to fall into …

        I will definitely check out the link you provided for your friend, thanks again!

        Keep your fingers crossed for me, as I write this I am dealing with the sniffles and a bit of the body aches/chills, so I really don’t want to be coming down with something ahead of my vacation to NYC next week.

        Chat soon,
        Charlene.

  • #15465
     Steve Dragoo 
    Participant

    @Bob

    Thanks again Bob. Yes been on PF news a few months now. There are some vids on YT regards PF to help caregivers and family understand what we are going through to help in a more positive way.

    Yep – grab an extra bag for pills + pills.  Previous comment was a bit facetious knowing we would need to buy another suitcase under current prescriptions…

    Months ago I signed up for phase II w a foreign entity but not expecting to hear anything from them for a few months.

    Best to you – enjoy FL been there many times.

    SteveD

    • #15507
       Steve Dragoo 
      Participant

      Hi Charlene – So it seems you go from the normal frigid to just the downright cold for sunbathing and relaxation. Nice – stay well… SteveD

      • #15529
         Charlene Marshall 
        Keymaster

        Ha! Yes, I guess you could say that Steve 🙂
        Hope you’re having a nice week!

        Charlene.

      • #15567
         Bob 
        Participant

        @Steve Dragoo

        Hi Steve:

        Just as a follow-up to our earlier discussion on combining OFEV and ESBRIET, I just found out today that in the province I live in in Canada – Ontario- our government programme will not reimburse for combining of OFEV and ESBRIET.  I would imagine this is probably the same across Canada.  So that will definitely ease any future need to buy that extra suitcase.  Have a good weekend

      • #15579
         Charlene Marshall 
        Keymaster

        Hi Bob,

        I know your follow up was to Steve, and I love the comment about the suitcase and not having a need as our Ontario healthcare plan won’t reimburse for combining OFEV and Esbriet together. This is good to know from a fellow Canadian, thanks for looking into that! Pack just one suitcase for your stay in Florida when you leave this week 🙂

        Cheers,
        Charlene.

  • #15475
     Bob 
    Participant

    @CharleneMarshall

    Hi Charlene. As you will note I seem to be getting my posts through at last.  I note from several participants that they are US residents and I do have empathy with them over the difficulty they experience in paying for OFEV.  If it were not for the fact that our government funds the drug in Canada (with certain qualification requirements), I doubt I would be on it.

    I noted 2 postings in particular.  Jean Benford was looking for assistance in paying $2300 a month.  Jacki Baum provided information about 2 support outlets so hopefully Jean saw this.

    For those of you whose diagnosis is new  I would encourage you to educate yourself about IPF as much as you can.  There is a wealth of information on the disease on the internet and a myriad of articles on interpreting Pulmonary Function Tests (PFTs).  There are also a series of educational videos on You Tube on PFTs.  Also keep a positive attitude; don’t assume your condition is going to worsen because as Charlene has pointed out in an earlier post, IPF effects people in different ways.  I was definitively diagnosed in 2012 but evidence shows I may have had it since 2008.

    So as the say in the UK where I was born, “keep your chin up” and good luck to all of you.

     

     

     

     

     

    • #15494
       Charlene Marshall 
      Keymaster

      Hi Bob,

      Yes, I am so thrilled that your messages are getting through at last. Thanks for sticking with us, as your contributions to the forum are very valuable and we appreciate the time you take in posting!

      I agree re: the US residents and their struggle to pay for Ofev. I am in Canada as well, and with all of my debt (school debt, as I did both a 4-year Undergraduate degree and then a 2-year international Masters degree) and those payments, I doubt I’d be able to afford the Ofev as well. I would have to get creative, ie. fundraisers or something to afford it if it weren’t covered by our healthcare plan. Starting out with a career (I’ve only been working in my career for under 5 years), plus paying for a mortgage, school debt, etc is a lot and I couldn’t imagine having to factor in the cost of a medication this pricey as well.

      I do hope Jean and Jacki connected around the ideas for financial aid to help with this drug too!

      Thank you for your kind and encouraging words Bob, great ones to go by. Lots of information online, and this forum has lots of wonderful people to help answer questions too. Thanks for writing us!

      Warm regards,
      Charlene.

    • #15581
       Bob 
      Participant

      Hi Charlene:

      So you are in Ontario too?  Where?  I’m in a small village called Colborne which is situated between Cobourg and Brighton.  If you know the 401, Colborne is where the “Big Apple” is located.

      • #15592
         Charlene Marshall 
        Keymaster

        Hi Bob!

        I know where Coburg is, my brothers used to play hockey there although it is about a 6 hour drive from where I am. I’m about 3 hours north (and a little west) of Toronto. Hello from a fellow Ontarian! 🙂

  • #15488
     Anne Philiben 
    Participant

    I had to quit.  After months of not going out, staying home worried about diarrhea I went to family thanksgiving.  It was ruined.  I just can’t take it anymore.  I’m tired of the restrictions, the schedule, the diet changes.  It isn’t worth it to me.

  • #15495
     Charlene Marshall 
    Keymaster

    Hi Anne,

    I am so sorry to hear of your experience with the Ofev, it breaks my heart knowing how much it is interfering with the things that should otherwise bring you joy. Is your doctor willing to try Esbriet for you, to see if you tolerate it any better? This is of course if you’re wanting to try it, and I can completely understand if you’re not given your tough experience with Ofev. Did your doctor ever bring up a stomach coater medication, to see if that would help with the diarrhea? I am no physician so I have no idea if it will help, but sometimes I have to take an anti-inflammatory medication that is terrible on my stomach and my doctor offered a medication to help coat my stomach when I take it and it seems to help. I can go check the name of it for you if you’re interested? Not sure if it would have the same effects for Ofev or not….

    Thanks for writing, but so sorry to hear of your tough experience.
    Hang in there,
    Charlene.

  • #15510
     Karl 
    Participant

    I have found that if I have a bout of Montezuma’s revenge, I simply don’t take the next Ofev dose and let my body return to its more normal behavior. This usually works for me but it might not work for everyone.

    In my non-medical opinion, the value of quality of life by not taking the drug for 12 hours,even 24 hours, far exceeds the possible advantage (which I suspect is minuscule in the overall scheme of things) the drug has on extending my life. Will I die 1 day sooner? I’ll play that game for 1 more day of quality of life.

    • #15530
       Charlene Marshall 
      Keymaster

      Hi Karl,

      I really like how you phrased this, and your approach to valuing quality of life over the possible advantage of the drug causing the problem. I agree, in the long run, taking a break from a drug for 12 – 24 hours to feel better is likely not going to be too harmful, and many of us choose to value quality of life especially when quantity isn’t guaranteed, unfortunately. Your words really resonated with me, thanks for sharing them and letting us know how you manage the unpleasant side effects of our anti-fibrotics.

      Thanks again for connecting and I hope you’re doing well!
      Charlene.

  • #15514
     Bob 
    Participant

    @Charlene Marshall

    Good to hear from you.  I seem to recall that I read there was a study that showed combining the 2 medications did not indicate any better results that each being taken separately but I don’t know where I read about it..  I have to admit when I saw this whole idea I took it with a pinch of salt.  The cost would be horrendous and Steve and I were joking that i’d need an extra suitcase just to ship my supply to Florida.

    Had a PFT last week and see my Doc on the 10th.  I’d normally be in Florida already but had to hang around to be sure my liver didn’t leak or something.  We have all arrangements made to get out of Dodge on the 15th and only a very solid medical reason is going to keep me from not following through.  I refuse to allow this condition or the medication to control my life.  Next year my Doc better get organized because i’m outta here November 1st.

    Enjoy your trip to the Big apple.  Last time I was there was July 2001.  Took a bus tour that included the WTC.  A few month’s later 911 happened.

    Regards

    Bob

    • #15531
       Charlene Marshall 
      Keymaster

      Hi Bob,

      Thanks so much for writing, and I am so glad your message continue to get through to us all on the forum. How is your week going so far?

      I am busy preparing for two events (kind of like a fundraiser, helping me with some medical expenses) this week so I will be ready by the time Saturday night hits and both are over with. That said, it’ll be nice to see friends and family come together for support.

      Yes, I agree with you re: the two anti-fibrotics being used together and not only the luggage that would be required to transport them anywhere, if spending time outside of home, but also the cost, particularly to our US friends. It would be next to impossible to afford the drugs together I’d bet. I would imagine if a lot of data showed the benefit of the two drugs being used together, then some doctors would start prescribing that and I don’t know any who do that, other than maybe one I’ve heard of through this forum but they were kind of just being optimistic about it based on my understanding. I have enough drugs and don’t need any more 🙂

      Good for you, not allowing this condition to keep you from doing the things you love to do. I wouldn’t want it to keep me from the warmth and sun of Florida either! If you think about it, please let me know how your PFT goes and follow up with the doctor on Monday, I’ll be thinking of you.

      My vacation destination certainly won’t be as warm as yours, but I love NYC at Christmastime. I went last year and unfortunately it was a disaster – a NYC yellowcab crashed us headon into a pole and we were all injured. We’re in the final stages of a lawsuit / settlement as a result of that, but its been a mess this year. I have so much hope that my trip this year will be 100% better and I am going with my Mom who is very excited to see the city. We will be doing the 9/11 memorials too, I’ve done that before but she hasn’t. Shoudl be a good trip, thanks again for the well wishes.

      Take care,
      Charlene.

  • #15544
     Bob 
    Participant

    @Charlene Marshall

    Hi Charlene:  Boy the things you learn about.  You know you originated this Forum and all the particpants, including yours truly, have given you input into some parts of their lives and their history with IPF and OFEV.  But I have yet to see Charlene’s history with IPF and OFEV.  And then I mention my visit to NYC way back in 2001 and bang!, you tell me about the serious accident you and other family members were in last year.  What an awful experience.  I hope you had Emergency Travel Insurance and if not is that perhaps what the fundraising you mentioned is about?   Good luck with the final outcome of that settlement.

    I’m sure your trip this time will be eventful for more pleasant reasons.

    I’ll let you know the outcome of my visit on Monday…….I know exactly who is leaving town on the 15th, the only unknown is will it be with my Doc’s blessing!

    Take care and god luck with the fundraising.

    Bob

     

     

     

     

     

     

     

     

     

    • #15576
       Charlene Marshall 
      Keymaster

      Hi Bob,

      Thanks for your reply and I hope this note finds you doing well! I think you’re in Canada, not too far from me actually so I hope you’re enjoying the beautiful Sunshine this morning. The sun makes a huge difference for my mood, and its been nice to see it again the last few days. Maybe it is getting you prepared for the warm, sunny days ahead for you in Florida! 🙂

      It is so nice hearing everyone’s story on this forum, isnt it? I find it brings me a great deal of comfort although I certainly wish none of us had to deal with this disease. Regarding my own history with IPF, diagnosis and medication, you can find it here in a reply to Rene if you’re interested: https://pulmonaryfibrosisnews.com/forums/forums/search/?bbp_search=rene

      Its a lot to type out but I did a thorough explanation of how I came to be diagnosed with IPF just a few weeks back for her. Yes, unfortunately the wreck in NYC was pretty bad last year, we’re still in a settlement process for that. I am eager to go back to NYC this week (a year later) and make new, happier memories there with my Mom. We did have travel insurance thank Heavens, so our hospital bills we believe will be covered in full, just waiting on the confirmation of that. Unfortunately, its the rehabilitation costs that have been so expensive as my work benefits only cover so much per year. This is where I am wanting some compensation for through the settlement. We’re in the final stages of that so fingers crossed the outcome is good for us!

      The fundraising is actually just a bit of extra money for me, as I was off work for a bit completing a pulmonary rehab program and unfortunately, school debt doesn’t care if you have a chronic illness: they want bills to be paid. I am still doing okay, and did go back to work (although I got really mad this week and wrote a resignation letter, which was a bit reactive so I’m working through that with my employer. They “understand” I am under a tremendous amount of stress right now) so income is flowing again. That said, the fundraisers were something I love to do – helping others make custom decor signs for their homes. I did all the prep and had the supplies, and they paid me to come make them so it was really nice. Just glad it’s over, it took a lot of energy out of me 🙂

      Fingers crossed for a good appointment on Monday, and safe travels on the 15th! Looking forward to hearing from you from Florida.

      Regards,
      Charlene.

  • #15557
     Zach Adman 
    Participant

    I’ve been on OFEV since March 2016. Started off fine then got the typical side effects.  One tip that seems to help, that was recommended on some site I was on, was to have protein in the meal you eat every time you take your OFEV. Really seems to have helped.

    • #15577
       Charlene Marshall 
      Keymaster

      Thanks so much for sharing this tip/reminder with us, Zach! It is a good one and unfortunately is one I sometimes forget, especially as I am eating something when rushing out the door. Do you find any particular protein more helpful than another, ie. a protein powder/shake vs. a chicken breast with your meal? Just curious as I don’t have too many side effects from the Ofev right now but I am guarded because I know others have developed a sudden intolerance for it so I always want to have some “tools in my toolbox” to try if that happens for me.

      Thanks again for sharing, looks like your post was really helpful for a few folks already.

      Have a great day!
      Charlene.

    • #15583
       Bob 
      Participant

      Hi Charlene:

      I’ll respond to your total posting a little later but i’m intrigued about the rehabilitation costs you are incurring as a result of your accident.   I’m assuming you have hired a lawyer to fight your battle with the insurance company and any costs you are incurring now will be part of that settlement.  OHIP also covers rehabilitation costs but i’m not clear on where they stand when the accident occurred in New York State.   Generally there is a distinction made between what OHIP covers and what the Auto company should cover, and Rehabilitation falls into OHIP’s bag.  If they won’t cover it because the accident happened outside Canada then clearly (to my fuzzy mind) it has to be part of your settlement as an ancillary expense under “pain and suffering”.

      I’m sure you or your lawyer have looked into the ins and outs but since I spent 45 years in the life insurance business, the topic intrigues me.

      Elaborate if you feel inclined.

      Enjoy your trip

      Bob

       

      • #15593
         Charlene Marshall 
        Keymaster

        Hi Bob,

        Thanks for your kind words, and no worries – I don’t mind sharing this experience at all. Actually, I’ve learnt so much about what needs to happen when you’re in a car accident out of country by “trial and error” that it’d be nice to pass on this new-found knowledge to someone. That said, I hope no one ever needs my help with this type of information!

        My work benefits are like most other standard policies in Canada, I have so much per calendar year for things like massage, chiropractic support, physiotherapy, etc. What I’ve needed in terms of rehabilitation far exceeded the allotment for this calendar year, so unfortunately I’ve paid quite a bit out of pocket. Early in the year (shortly after the accident happened) I was seen at a physiotherapy clinic specific to muskulo-skeletal injuries, as I had significant damage to my shins. I needed both PT along with something called electric shock-wave therapy so after going a few times there, my benefits for PT got eaten up really quickly. Then in April I was diagnosed with a concussion, even though it was 5 months later they said oftentimes an untreated whiplash injury leads to post-concussive symptoms, which I was having. So as a result of that I’ve been going to a concussion PT that specializes in treatment of motor vehicle accident patients, and that is $110 per visit (usually 60 minutes). It is helpful, but I’ve spaced out going because I can’t afford to go that often now. I’ve also been seeing a massage therapist to help with the inflammation in my neck and shoulders that has developed as a result of my neck injury sustained in the crash, it is just a mess! I truly had no idea how much a car accident could impact your body for such a long time.

        We have hired a lawyer to represent us in the case, and actually had lots of options because this should be an “easy” case to win since we were passengers in a commercial vehicle that crashed. There was no other vehicle involved, so there is no doubt that the driver is at fault. Our lawyer is through the US though, as it had to be that way given where the car accident occurred. As a result, because we aren’t going through our car insurance since our vehicles weren’t involved and we didn’t want our premiums to go up, we can’t access OHIP for coverage of our rehabilitation expenses. This was the chance we took by not opening a personal claim and having our monthly rates go up; we’d just factor all of our rehabilitation expenses and then lots more into a settlement. I just really am desperate for this to be over, and to come out on “top” financially. It’s been such a mess! I really am curious to note the amount of the settlement we will be demanding, I should know that in a few weeks.

        Feel free to ask any more details, I don’t mind talking about it. It was emotional for a little while after the accident, but I’ve really worked through most of that now.

        Take care and chat soon,
        Charlene.

    • #15612
       Bob 
      Participant

      Hi Charlene:

      You might be in NYC by now.

      Thank you for your detailed reply.  It was as I expected but I really don’t understand why OHIP wouldn’t have covered your rehab, despite the fact that you were not claiming through your Canadian auto insurer.  Did you question your family doctor about this and ask him for a referral to the rehab clinic(s)?  To my mind (the fuzzy one again) you were involved in an accident and it is co-incidental that it happened to be in NY state.  You are not receiving rehab in NY state, which we know they wouldn’t cover, but here in Ontario.  Hope you won’t mind but i’m going to pursue this a bit more and will report back my findings.

      Reading your experience leading up to your diagnosis of IPF, you seem to have had a rapid onset of the condition given the sudden change in your well-being.  Where are you at now?  Do you have the usual symptoms?  What was your last FVC reading on your lung function test?

      You asked me to let you know the outcome of my LFT and it was all very positive.  So much so that my FVC went UP 11% from 94% to 105%.  This is why I sometimes feel a fraud when I read and hear other peoples’ experience and why my wife and I have questioned my diagnosis.  But i’m not complaining.  As a result we have the green light to leave for Florida on Saturday.

      Will get back to you on my OHIP research.

      Regards

      Bob

      • #15673
         Charlene Marshall 
        Keymaster

        Hi Bob,

        So nice to hear from you, thanks so much for doing some research on OHIP for me! Did you get to Florida safely yesterday? I think if memory serves me right (though, I am quite tired from NYC :)) you were going to be leaving yesterday. How is the weather?

        I am home from NYC and will likely take a few days to catch up on the forums but my trip was absolutely magical. It really made up for the heart-ache that came with last year’s trip and the accident, which is what I needed. I love NYC again, I think it is so magical at Christmastime and was reminded of that again this trip! How was the rest of your week and weekend?

        I ended up getting a referral to the rehab clinics through the ER that I had to visit after returning from NYC last year when the accident happened. They could have billed our auto-insurance for rehab costs, but we didn’t want to go that route, and therefore OHIP wouldn’t cover the remainder of the bills (that auto insurance wouldn’t cover). I don’t mind your reporting back on any findings, I appreciate the learnings as this has been such a learning curve for my friends and I who were all involved in the crash. I did just get a form back from our employment insurance seeking more information to cover the outstanding thousand(s) of dollars hospital bill so thats good news, since it isn’t a denial form.

        So glad you got the clear to travel, and even happier to hear your FVC went up 11% , that is wonderful news! On any given day, I typically sit in the mid-40s in terms of my FVC percentage. I don’t find the shortness of breath as bad as I did when I was trying to figure out what was going on with my lungs, but I do find the fatigue and dry cough pretty overwhelming some days!

        Hope your flight went well and that you’re gearing up for a warm holiday season in Florida.

        Cheers,
        Charlene.

  • #15558
     Karl 
    Participant

    Thanks Zach, That’s a reminder I had forgotten.

    • #15723
       Bob 
      Participant

      Hi Charlene

      Will write more later.  Just got to the house in Florida.  We don’t fly we drive.  Good uneventful trip.

      Later

      Bob

      • #15751
         Charlene Marshall 
        Keymaster

        Sounds good Bob, I’m glad to hear you made it down to Florida safely and that your trip was uneventful. If it is sunny and warm there today, please send some of it our way. It’s rainy and grey here today! Enjoy your time there and happy holidays!

        Charlene.

  • #15559
     Bob 
    Participant

    @Zach Adman

    Thanks for the tip Zack.  Could you comment a bit more on the side effects you experienced and a little more specifics on the improvements you noticed?

    Bob

  • #15561
     Zach Adman 
    Participant

    Typical ones, nausea, diarrhea. I still get them periodically, but much less than before.

  • #15563
     Bob 
    Participant

    @Zach Aldman

    Thanks Zach.  Have a good weekend.

  • #15590
     Zach Adman 
    Participant

    Charlene

    I normally have cereal for breakfast so started adding an egg for protein. At dinner, if I have pasta, for example, I’ll have some turkey slices afterwards as my protein.

    As you can see, I’m not very imaginative in the kitchen.

    • #15594
       Charlene Marshall 
      Keymaster

      Hi Zach,

      Thanks for getting back to me and no worries re: not being super imaginative in the kitchen. Sounds like you’re managing to get what you need, which is the most important. Adding an egg to meals is actually something really easy but not something I think about very often, so good idea. Thanks for sharing!

      Take care,
      Charlene.

  • #15628
     Bob 
    Participant

    Hi Charlene:

    Following up on OHIP and Rehabilitation.

    The OHIP site is pretty specific on who they cover – seniors and those under 19, as well as those claiming under Workers Comp or under their Canadian auto insurance.  I know you aren’t under 19 and based on your picture I doubt you are a senior.  The site is less specific about who else they will cover but they use the phrase “may provide coverage” where you are discharged from a hospital and as a result of injury.  Here is another site you might find of interest:

    OHIP and Physiotherapy

    I also spoke to a Travel Insurance carrier and to WeFixU who I go for a Chiropodist and each didn’t outright say the door is closed.  Therefore it seems 2 options are open to you:

    1)Detail all of your expenses to your US lawyer and seek reimbursement as part of your settlement and/or

    2) File an Appeal with OHIP for their consideration by their Appeals Committee.

    Again I have learned something from this little exercise.

    Regards

    Bob

    • #15678
       Charlene Marshall 
      Keymaster

      Hi Bob,

      Thanks so much for the follow up information regarding OHIP and rehabilitation. It is really interesting, and I guess parallels what the rehab centers advised when I was deciding about whether or not to bill through our auto insurer, but did decide against in the in the end. I’ve built in all expenses to the settlement amount from the lawyer, and am just waiting to hear from her on the “demand” we’re going to make. If it doesn’t come through successfully, though it sounds like it will, maybe I’ll consider the appeal with OHIP. Good information, and I’ll share it with the other two in the accident too as I don’t know where they are in their settlement process.

      Thanks again, I appreciate it and glad you found out some information in the process. That said, I hope you never have to use it 🙂

      Cheers,
      Charlene.

  • #15762
     Bob 
    Participant

    Hi Charlene:

    It is warmer down here in Florida but we have had heavy rain since about 2am on Thursday morning and straight line winds and a tornado south of us that damaged 80 mobile homes and took the roof off a detached home.  So not all is great in paradise.  Have  a very merry Christmas.

    • #15776
       Charlene Marshall 
      Keymaster

      Hi Bob,

      One of my colleagues this week was watching the weather for Orlando as she and her family are headed there for Christmas, and she mentioned all the rain/flood warnings that are out. Not sure if you’re anywhere near Orlando, but would make sense to be with the weather you mentioned you’re getting as well. At least it is warmer there, hopefully the rain stops and the sun comes out for you! I love Florida, although it’s been awhile since I’ve been… maybe I should consider a trip there in the new year. 🙂

      Have a great Christmas!
      Charlene.

  • #15764
     Bob 
    Participant

    Hi Charlene:

    I had some experience with filing an appeal through OHIP.  One of the interesting things I found out is that all of their communications are sent via courier.  Also, at the hearing itself, which was via a conference call as I was in Florida, the Chairman or Moderator was a QC.  So they wouldn’t pay my claim but they could incur considerable expense to fight it.  QCs don’t come cheap!!  That said I still encourage you and your friends to appeal.

    • #15777
       Charlene Marshall 
      Keymaster

      Hi Bob,

      Thanks for writing and sharing these details with me. This can be something I consider in future, for sure and I might reach back out to you to obtain more details. Whether we appeal for OHIP coverage I think will depend on the result of the settlement, although our lawyer suggests that she doesn’t think we will have any trouble getting the settlement due to the conditions of the accident. That said, there is always a risk that a “loop hole” will be found unfortunately. It’ll be good for my friends and I to keep the OHIP appeal in mind though if needed. Thanks again for sharing. Hope the rain / weather has settled down some for you in Florida! You sure aren’t missing much here in Canada: its another chilly, windy and dreary day!

      Cheers,
      Charlene.

  • #15779
     Bob 
    Participant

    Hi Charlene:

    Yes it is warmer here even if it has been wet.  We are 2 hours straight west of Orlando.

    Those deary winter days in Canada are what would drive me potty and as far as the cold is concerned i’m a coward.

    Hope it brightens up for you.

    Regards

    Bob

     

  • #15784
     Charlene Marshall 
    Keymaster

    Hi Bob,

    I’ve heard Florida has been quite wet this season, hopefully that sun comes out soon and dries everything up for you. What are you spending your days doing in Florida?

    I sure miss the sun here in Canada, feel like we haven’t seen it in months or if we have, it has just been in short glimpses. It’s supposed to snow a bit today, which I am okay with if it means a white Christmas eve/day. We’ll see – seems to “warm” to snow right now but I’d much rather snow than rain. Fingers crossed!

    Happy Holidays.
    Charlene.

  • #15809
     Glenda Rouland 
    Participant

    Had been on Esbriet for 2.5 years  had a decline so doctor switched me to Ofev. Been taking 2 months getting bad joint pain and muscle pain. Anyone else experience and did it go away after a bit

  • #15822
     Charlene Marshall 
    Keymaster

    Hi Glenda,

    Thanks for joining the PF forums – welcome again! This is a wonderful group of people who will always help you if they can 🙂

    Sorry to hear you’ve been experiencing joint and muscle pain since switching to Ofev. Did you have this on Esbriet as well, even initially? Unfortunately joint and muscle pain is something I experience on the regular now too, and have been on Ofev for awhile (never was on Esbriet) so I wonder if they are connected? I thought in general my pain might just be from chronic under-oxygenation but maybe it is medication-related. Other than trying different meds for the pain (which I’m not a fan of, but I know lots of people are) I use topical lotions with an anti-inflammatory in it, such as Voltaren. I do find it helps quite a bit – have you ever tried this?

    Goodluck and feel free to connect anytime. I hope you had a nice holiday!
    Charlene.

  • #15830
     Bob 
    Participant

    Hi Charlene and Glenda:

    I have to admit you are both the only people I have heard of who have experienced joint and muscle pain.  I have just re-read to booklet that we are given in Canada with first OFEV prescription and there is no mention or even a hint of joint and muscle pain.  Glenda Have you got a support group and a nurse assigned to you by the OFEV support program?  If so I would definitely discuss it with them. If not i’d go direct to the manufacturer, Boehringer Ingelheim.

    As far as the joint pain is concerned I have taken Clucosamine Sulphate for years.  Its not a drug but a health food supplement that you  can buy in Walmart or any drug store or health food store.  Walmart is the cheapest.  I only take the basic form and not the form that contains other other additives like Conglotin (sp) as their effectiveness is questionable and it makes the basic form much more expensive.   I have no joint pain whatsoever and i’ll be 80 in February.  I believe the recommended dose is 2000mg a day to start and then 1000mg a day.  You can look it up on the internet.  It’s not immediate but will take a month or 2 to kick in.  Hope this helps and stay in touch.

    Regards

    Bob

    • This reply was modified 8 months, 3 weeks ago by  Charlene Marshall. Reason: formatting
    • #15856
       Charlene Marshall 
      Keymaster

      Hi Bob,

      Thanks for getting in touch with us about these unusual symptoms that Glenda and I are experiencing. How is the weather down in Florida right now, has that rain stopped yet?

      I have to first disclose that I’m not certain the muscle/joint pain is directly linked to the Ofev but it could be. I have some other things going on, following a car accident last year that might also be the culprit of this type of pain. My doctor has also explained that it can be caused by general under-oxygenation as well, which I’m sure is part of my issue.

      I’ve not heard of the Clucosamine Sulphate before but I’ll maybe keep an eye open for it the next time I’m at my local Walmart, thanks for the suggestion Bob. I like the idea of it helping/reducing pain but not being an additional drug, because if I can avoid more medications I’d like to.

      Thanks again for sharing and hope you’re enjoying Florida!
      Charlene.

  • #15831
     Bob 
    Participant

    Hi Charlene and Glenda:

    I copied the drug manufacturers name from the internet so that explains all that gobilty-gook before the name.  No I wasn’t drunk!!

    Bob

    • #15857
       Charlene Marshall 
      Keymaster

      No problem at all Bob, I edited the formatting so it shows up correctly now 🙂

      Cheers,
      Charlene.

    • #15871
       Bob 
      Participant

      Hi Charlene and Glenda:

      Rain long gone and today it is 80F and these temps will continue until about next Thursday when the next Front s due to drop us back down into the 60s for a few days.  That’s typical Florida winter weather, particularly in an El Nino year.

      Yes try Glucosomine.  My wife also uses it and swears by it.  By the way I spelt it wrong last time: it beins with a G and not a C.  but remember only get the basic one.

      Yes Glenda it would be very interesting to hear what the manufacturer says.  Also can you tell us where you are from?  Charlene and I are both in Canada.

      Regards

      Bob

      • #15886
         Charlene Marshall 
        Keymaster

        Hi Bob,

        Wow -80s F would be a wonderful change right now, although I can’t imagine what really warm weather would do to us here in Canada in December. It would be so confusing! That said, on Thursday it was +10C, and I was out and about in just a sweater, it was weird. This morning however, I woke up to a thick coating of the white stuff on the ground here, so enjoy those Florida temperatures! How long do you and your wife stay in Florida for?

        Happy New Year to you!
        Charlene.

  • #15832
     Glenda Rouland 
    Participant

    Did look up muscle and joint pain is a possible side effect. I will call manufacturer

    thanks

    Charlene and Bob

    • #15858
       Charlene Marshall 
      Keymaster

      Hi Glenda,

      Thanks for getting back to us. If the manufacturer mentions anything of particular interest or help when it comes to the muscle/joint pain being related to Ofev, will you report back and let us know? I hope your pain is being managed alright these days.

      Thanks for writing,
      Charlene.

    • #15898
       Bob 
      Participant

      Hi Charlene:

      We are here until the end of April.  Due back in Ontario on April 27th.

      Happy New Year to you too!

      • #15905
         Charlene Marshall 
        Keymaster

        Wonderful Bob, enjoy the next few months of warmth and sunshine in Florida!
        Looking forward to a wonderful 2019, thanks for being part of my circle of support in the last year!

        Cheers,
        Charlene.

  • #15872
     Glenda Rouland 
    Participant

    Charlene and Bob I am living in Birmingham AL. Been here 18 years originally from Michigan and hubby from IL.  I was diagnosed in with IPF in oct  2015 but had in 2013 dr never saw X-ray. I went on oxygen last Jan and have gone from 2L to last 3 months 4L.  I go to UAB which is a center of excellence so I am lucky there although my doctor has left to go to Vanderbilt so having another in group.

    I am an Ambassador for the pulmonary fibrosis foundation so doing some travel for them raising awareness.  Been married 47 years 2 grown children and 2 precious granddaughters 8 and 11 so I am blessed  best wishes for you all for a great happy healthy New Year

    • #15887
       Charlene Marshall 
      Keymaster

      Hi Glenda,

      Thanks so much for sharing some information about yourself with us, I love connecting with folks on this forum! I have heard really great things about UAB as a centre of excellence, and know a few (3 that come to mind) young people <30 years old who have had successful transplants there due to CF, not IPF. Will you/have you considered transplant or will you be a candidate for it one day?

      Very cool about being an ambassador for the PF Foundation – they’re doing really great work out of the states for those of us living with this illness. Thank you for the time and energy you put into that role, which ultimately benefits us all. Sounds like your grand daughters are at a wonderful age – enjoy moments with them, I bet Christmas was fun this year given their ages? Enjoy! Have a wonderful day and all the best in 2019!

      Charlene.

  • #15874
     Bob 
    Participant

    Hi Glenda:

    Thank you for giving us your background information.  It is very helpful to know as there are usually differences on the handling of OFEV in different countries and I know there are definite differences between Canada and the US.  I was born in Belfast N.Ireland, went to live in London at age 16, got married to a gal from Gloustershire and emigrated to Canada after 10 years.  Been in Canada for over 50 years.  I’m afraid i’m a bit of a fraud as far as IPF is concerned.  Diagnosed in 2012 but I think it was there in 2008.  CT Scans and Lung Function Tests say I have it but I have never had any of the main symptoms (shortness of breath and chronic dry cough).  I went on OFEV in July after resisting it due to my lack of symptoms and side effects.  So far nothing major of a negative nature.  So when I hear of others like yourself and their experience I really do feel a fraud.  I have read quite a bit about it and if I can help others i’m more than happy to do so.

    Regards

    Bob

    • #15888
       Charlene Marshall 
      Keymaster

      You certainly are helpful Bob, and I am glad you’re on the forums. I will also keep my fingers crossed that the symptoms of IPF stay contained for you for quite some time; enjoy it for now 🙂

      Take care,
      Charlene.

  • #16593
     Malcolm Mann 
    Participant

    Test again why oh why cant I post

  • #16594
     Charlene Marshall 
    Keymaster

    Hi @mal-com,

    I think you’re doing everything right – I am seeing your posts 🙂

    Charlene.

  • #16597
     Malcolm Mann 
    Participant

    Hi Charlene I seem to be only able to post one liners, a few lines gets an cant post now message?

    • #16599
       Charlene Marshall 
      Keymaster

      Hi @mal-com,

      Oh, that is really odd, so sorry you’re experiencing this! Let me ensure I understand, so I can try my best to resolve it for you. You can type a couple of lines within the text box, but then do you receive an error message? Any chance you could try on a different browser on your computer, just to ensure it is a problem on our end? As an example, if you use Google Chrome to open up internet pages, could you try on Internet Explorer (for Windows / PC computers) or Safari if you’re using a Mac. Sometimes the browser if not updated can cause error messages. If the problem persists, we’ll work through it together. I’ll ask our tech team in the meantime, and see if they have any suggestions. I’ll get back to you shortly!

      Thanks,
      Charlene.

  • #16850
     Bob 
    Participant

    Hi Marie:

    I hope you get this. I received a friend request from you but i’ve been away and when I tried to acknowledge it, it had disappeared.  If you want to send it again i’ll be glad to accept.

  • #16851
     Bob 
    Participant

    Hi Charlene:

    Been away…actually up in Hamilton Ontario for a few days.  Used that new no frills airline Swoop owned by WestJet.  Went through the worst nightmare flights due to weather and maintenance problems.  Not all Swoops fault.  But Hamilton airport is a disaster for passengers.  Will never use it again if nothing changes.

     

  • #16853
     Charlene Marshall 
    Keymaster

    Hi Bob,

    Nice to hear from you, although sorry the flight and airport was such a disaster. I can only imagine how chaotic the airports were around here the last few days, there is so much ice everywhere! Typically I enjoy WestJet flights and have used Swoop with no issues, but it wasn’t in the middle of an ice storm either. Are you back safe and sound now to sunny Florida?

    Enjoy!
    Charlene.

  • #17325
     Malcolm Mann 
    Participant

    HI Charlene and others

    I’m a 69yo Australian man, diagnosed with very mild pulmonary fibrosis in 2015. I have had more breathlessness since mid 2018, my condition was confirmed as IPF in Feb 2019 after a squillion tests and biopsy, started Ofev 8th Feb, a month ago.

    The decision of which anti fibrotic was entirely left up to me, I chose Ofev because of the sun sensitivity issues with Esbriet. The cost is covered by the Aussie Govt here.

    I have had some of the mentioned side effects, diarrhoea, stomach ache but certainly not to any great degree, a mild inconvenience if any. Including a couple of hurried visits to the closest loo. I believe, I have become more sun sensitive than before. I’m able to do ocean swimming, up to 2 km races at a modest pace which involves a lot of sun exposure, we live in a beach village. I am using a hat & sunscreen everytime I venture out now, a first for me.

    cheers

    Mal

    • #17345
       Charlene Marshall 
      Keymaster

      Hi Malcolm,

      Thanks so much for writing to us, and welcome from up north here in Canada! I visited your beautiful country three times between 2015-2016 and absolutely loved it. Where abouts in Australia are you from? I spent time in NSW, Victoria and South Australia.

      Glad you seem to be tolerating the Ofev fairly well, or at least as expected, since starting it in early Feb. I don’t have any experience with Esbriet but I’ve tolerated the Ofev quite well, fingers crossed. Glad the government will pay for the anti-fibrotic for you, that is great news and I think I’d worry about the sun exposure on Esbriet as well. Did you get any other medications with the Ofev to help reduce any of the unpleasant side effects, like a stomach coater? Some people get that and others don’t it seems….

      Oh the ocean, I am just so jealous of your easy access to the sea. That is where I feel most at home! Enjoy that sun (with proper precautions) and warmth too!

      Warm regards,
      Charlene.

  • #17327
     Steve Dragoo 
    Participant

    @mal-com

    G’day Mate! – Steve here in Virginia USA.  I was originally diagnosed in Oct 2016 in Manila and returned to the US in April 2018.  O2 went downhill since returning but I declined the two western meds and opted for pulmonary PT, supplements and class IV laser treatment.  The supplements alone changed my O2 prescription from having portables whenever needed to only at night with my new CPAP home machine.

    The laser by many accounts stops the progression.  A doctor, Dr. Andrew Hall, recently joined us here and has self-treated with a K-laser class IV specific protocol over 4 years.  He is in Sonora, CA and a very good and helpful man.  Get in touch with him and see what he has to say. I started the laser just a week or so ago and do feel more energy. Also looking forward to my next round of tests and CT scan to see what they show.

    There is a lot of good information on this forum in many places and I believe it is the most active of any type of lung diseases – especially member interaction.

    Enjoy! – Steve

  • #17346
     Charlene Marshall 
    Keymaster

    Wonderful summary of our amazing online community Steve, thanks so much for your reply to Malcolm! I wonder how much laser therapy options are available ‘down under’? Definitely something for him to look more into if interested. Thanks again for connecting back with him, and sharing such useful information. I hope you’re having a nice week!

    Charlene.

  • #17361
     Malcolm Mann 
    Participant

    Hi Charlene and Steve
    Thanks for your responses.
    Steve In the 90’s I had laser treatment for planter fasicitis in both feet, which is notorously untreatable successfully, the laser cured it and I was able to run for another 25 years.
    We live in a little village, Tomakin 300km south of Sydney, and 160km from Canberra. We are surrounded by beautiful unspoilt beaches & forests, generally without crowds of people.
    I notice that while the northern US & Canada have had harsh winters (my daughter is in New York I get full reports) we suffered through a really hot January , the hot weather really knocks me around. When the temperatures are in the C 30’s (F 90-100+) my breathing becomes much worse and my walking even slower, is this to be expected?
    The only additional medicine included when I started on Ofev was a packet of Imodium, which I thought not a good sign.
    The Lung clinic in Sydney is running a blood test trial for those on Ofev, where changes in genetic markers are analysed in a sizeable trial group, blood samples are taken every 3 months.
    Thanks Charlene for the great job in keeping this forum running, it good to know we’re not alone
    Cheers
    Mal

    • #17370
       Charlene Marshall 
      Keymaster

      Hi Mal,

      So nice to hear from you, thanks for your reply and sharing a bit more about you and your experience with Ofev.

      I had no idea laser could be used for plantar fasicitis Mal, but that certainly makes sense! Glad it was effective and you could continue running, wow, good for you. Might you try it for your lung disease management, do you think Mal? I know lots of folks are exploring it and finding it beneficial thus far.

      Where you live in Australia, sounds beautiful! I just posted a photo of one of my favourite spots on the northern beaches coast of Sydney. Marsha and I have been talking about just how amazing it would be to meet for coffee there. Its so nice to dream, isn’t it? 🙂 I have several friends in Australia, who mentioned how hot January was there, they said they had trouble breathing and don’t have any type of lung condition. I am also bothered by the heat Mal, especially temps 30+ Celsius. Unfortunately, I think this is normal for many living with this lung condition…

      Really glad you’ve found our site Mal, it is nice to know we aren’t alone and that an online platform can bring us together from all different parts of the world.

      Take care, and write anytime!
      Charlene.

  • #17365
     Karl 
    Participant

    Hi Malcolm Mann, 81 yr old Karl here, diagnosed with “mild” IPF Aug 2018. CT scan for kidney stone in 2008 picked up lower lobes and showed some un-diagnosed scarring that appeared in 2018 CT scan that resulted in my IPF diagosis, therefore I’ve had IPF for 10+ years. Like you I’m very active. IPF is not really slowing me down — yet.

    My message to you: Keep up the ocean swimming! I completed 24 sessions of pulmonary rehab and now I’m doing active exercising in a gym 3 times per week and feeling noticeably stronger with far less breathing difficulty than when I was inactive and diagnosed last year. I fully expect a good outcome from my next breathing function test this coming March 25.

    Stay as active as you can my friend. Keep the endorphins going. Helps maintain a positive attitude too.

    IPF is what it is.

  • #17371
     Charlene Marshall 
    Keymaster

    So glad you’re noticing increased strength and less breathing difficulty with your exercise regimen Karl, that is excellent! I sure wish I could do some ocean swimming, can only imagine how good the salt air is, paired with the breathing that swimming requires, for our lungs. I used to be a competitive swimmer, and really miss it. I suppose I could try less strenuous swimming and more for leisure, to see how I tolerate it. Thanks for the idea!

    Take care Karl.
    Charlene.

  • #17388
     Malcolm Mann 
    Participant

    Charlene Karl
    Thanks for the responses, the lung clinic here recommends as much exercise as you can comfortably achieve.I’m very lucky they found my fibrosis early too, in some ways I’m here under false pretences, I can do anything I need to, at my pace.
    I can no longer run (because of arthritis), but I do a gym workout 3 times a week, walk(slow) and swim 4 or 5 times a week year round
    I’ve always been a swimmer, I did triathlons for 10 years, the secret to swimming with fibrosis is to wear a triathlon wetsuit, which keeps you bouyant and floating high and flat. So much so I dont have to kick at all, saving a lot of energy by not using those big leg muscles. Since my breathing deteriorated last year I have changed how I breath while swimming, I used to breath every 3 strokes, bi-laterally, lately I have been breathing 3 on the left and one on the right, so getting more breaths in.
    My local surf club “Broulee” has its annual “Bay to Breakers” ocean swim next Sunday, 1.4 km or there abouts I have done everyone since they started 8 years ago, it will be interesting to see what time I can manage this year.
    There is a nice little youtube video of my backyard, a) if I’m allowed to post links here b) if you’re interested, look up “Tomakin River from drone”.
    Cheers
    Mal

    • #17411
       Charlene Marshall 
      Keymaster

      Hi Mal,

      Thanks so much for getting in touch, it is lovely to hear from you. I am really glad you’re still able to do everything you love, but at your own pace, that is wonderful. I hope this lasts for a lot longer 🙂

      Really interesting to hear your thoughts on swimming, and what makes that task easier. I also used to be a competitive swimmer and really miss this. I’ve even been afraid of swimming for leisure since my diagnosis, although I will still do this while on vacation or when staying in a hotel, etc. Thanks for sharing the tip, I’ll consider this if I start lane swimming again, which I’d really like to do. I will definitely be swimming in the ocean in Hawaii as well when I visit in September. I can’t wait!

      Thanks again for sharing, and goodluck with your ocean swim next Sunday! If you think of it, please report back on how it goes, I’m curious to hear and I’ll definitely check out the YouTube video. Anything to help me dream of warmer weather, it is still so cold here!

      Cheers,
      Charlene.

  • #17402
     Debbi Rummery 
    Participant

    Hi everyone.

    I’m 62 and I live in Cairns, Qld, Australia – right on the Great Barrier Reef. I was diagnosed with IPF in October 2015. I started Ofev in December 2015 (one of the earliest Australians to start the medication) so I’m a little over 3 years now. I’ve had a few ups and downs with diarrhoea and mild nausea but have finally settled into a routine and it’s all looking good.

    Kind regards, Debbi

    • #17484
       Charlene Marshall 
      Keymaster

      Hi Debbi,

      Welcome to the PF forums, and thanks so much for sharing a bit of your story with us!

      First of all: oh gosh, I am so jealous of where you live! The Great Barrier Reef is on my bucket list, and I know I am running out of time to visit it (aside from also having a terminal lung disease) due to it rapidly dying off. The scenery around your home must be just beautiful? I visited Australia three times throughout 2015-2016 as I did my Master’s degree through Melbourne Uni, and it was actually atop the Sydney Harbour bridge when I climbed it that I knew something was indeed wrong with my lungs. I flew back to Canada shortly after that and was diagnosed with IPF.

      I am also on Ofev and the start of the drug was a bit tough, but seems I’ve adjusted well to it now, kind of “getting into the groove” I guess. Glad the side effects are tolerable for you as well. Are you happy with the care and knowledge of PF specialists in Cains? This isn’t something I’ve heard much about, but have spoken to folks about the great care in Sydney and at the Alfred Hospital in Melbourne too. I hope to get back to Australia in the next few years!

      Take care,
      Charlene.

  • #17403
     Steve Dragoo 
    Participant

    @debbi

    Hi Debbi,

    Steve here in Virginia, USA.  I was in the Philippines when first diagnosed w IPF early October 2016. After returning to the USA in April 2018 I did various tests here to confirm IPF.  Pulmonary PT helped and started me going back to the gym.  Tried various supplements but settled successfully on serrapeptase, astragalus, a good B vitamin complex, D3/ K2m7 vitamins together (been taking these a few years and recently increased D3 dosage), and K-laser class IV treatments.

    Laser and serrapeptase have definitely helped the most.  We have several forums here and you may want to look at Laser and Laser II. Several others are looking at specific herbal mixtures -WEI institute being the main one. Also, there are various clinical trials underway and at least one looks promising.

    Hope you will find your membership into our exclusive club a benefit as many others have. – Steve

     

    • #17485
       Charlene Marshall 
      Keymaster

      Couldn’t have said it better myself Steve, thanks for the warm welcome for Debbi and outlining some of the most helpful / popular topics on our wonderful forum community 🙂

      Charlene.

  • #17444
     Thom 
    Participant

    I just posted something and now I think it disappeared. Oh wait a while and see if it reappears

    • #17486
       Charlene Marshall 
      Keymaster

      Hi Thom,

      Did you find your post? I’ve “approved” any topics/discussions that required moderation so it should have reappeared for you! If not, I’ll take a look on the back-end, just let me know as we value all contributions to this site, and the effort that members take in writing to us.

      Take care and enjoy your Saturday!
      Charlene.

  • #17451
     Debbi Rummery 
    Participant

    @Steve

    Hi Steve,

    Thanks for the info. I’ve read quite a few of your posts and will look into it a bit more.

    At the moment I just walk on my treadmill for 20 mins daily in air-conditioned comfort because it’s a bit too hot to walk outside. It’s our summer and we’ve had quite high temps and high humidity.

    I did the Pulmonary Rehabilitaion course in 2017 and made some great friends. We started a Social and Support Group as there wasn’t one in Cairns. Not many here with IPF either so it’s for all lung conditions.

    I’m looking forward to meeting you all.

    Debbi

     

  • #17464
     Malcolm Mann 
    Participant

    Hi Debbi
    I’m on the NSW south coast and was also diagnosed in Oct 2015 with mild PF, as all the LFTs were normal then they didn’t do anything other than watch & wait, I went onto Ofev recently after some deterioration.
    Jan & I will be in Cairns in May on our way to Port Douglas for the hash house harriers (weird running group,no running for me) bi-annual national event.
    Welcome to this site, I’ve only just got here myself, here you realise the full impact of this insidious disease.
    Cheers
    Ma

    • #17465
       Steve Dragoo 
      Participant

      @debbi

      Hi Debbi – thanks for your kind words. I, fortunately, stumbled across this terrific forum and groups and people searching about IPF since modern medicine has very little answers.

      The good people here know and understand intimately what we are experiencing and will help us through. For some, it is a reality call at first but once that is adjusted to the mask can be dropped and deep experiences shared. I still look for my mask sometimes but it is good to better know where I am headed what will happen.  Sorta helps create any urgency about life and be an effective witness thereof.

      Lots of folks have very good and interesting posts and exploring them all when you have time will be a benefit to you and your loved ones.  I have shared a few videos and forum posts with my wife.  We have been apart a year and when I return to the Philippines she will not be getting back the same man that left.  – Hopefully, his name will still be Steve though. hahahahah Enjoy – Steve

  • #17498
     Debbi Rummery 
    Participant

    Hi Steve,

    I will admit to a bit of stalking before joining in and I quickly realised this was the place for me to be. I have wonderful support from my husband, children and sister but I think you sometimes need to speak to someone who is going through it too. I’m reading some of the back topics and can relate to a lot of them.

    I hope you get back home soon.

    Regards, Debbi

  • #17499
     Thom 
    Participant

    I was diagnosed in October with ipf. I retired after 53 years I am self-employed, 5 days later I was told I had ipf not the news I wanted to hear. I am on my third pulmonologist I had to search for someone that I felt comfortable with. I was first prescribed with esbriet the doctor I am with now said I would be better off with ofev. I started ofev yesterday for the first time. My doctor recommended I go for a few tests before I begin taking the medication. I am happy to say that’s so far I feel okay no stomach cramps no diarrhea no vomit although I’ve only swallowed 3 pills so far. The medication is just over $10,000 per month for 150 mg. Fortunately my insurance is picking up the tab. Ironically I changed Insurance just a few weeks before I was diagnosed. I will keep everyone informed as to how I’m doing it’s nice to have a place to go.

    One question for anyone on the site there seems to be a lot of advertising and I’m curious who owns and runs this website.

    Thank you all for listening warm regards. Thom

    A short PostScript. I saw my doctor the other day and mentioned to him some of the different remedies that are mentioned here. I mentioned the cold laser serrapeptase and also collodial silver. His reply was unless it’s FDA approved he is not interested, it’s about what I expected. so I told him when I return don’t be surprised if I am wearing a necklace made of garlic. I’m sure my grandmother would have approved!

    • #17506
       Charlene Marshall 
      Keymaster

      Hi Thom,

      Thanks for sharing a bit more about your story with us! I am glad to hear that you continued to look for physicians you were comfortable with, that is so important and something we often forget that we’re entitled to. This is something I learnt from a late friend of mine who passed away from Pulmonary Hypertension: keep searching until you have a doctor you’re most comfortable with!

      Really glad that so far you’re adjusting well to the Ofev, that is good news and I’ll keep my fingers crossed that it continues for you. Was there any particular reason the one physician recommended Ofev over Esbriet? I’m always curious to hear this from different doctors, not entirely sure why.

      Regarding the advertising, I am hopeful you’re only seeing our partnership advertisements Thom. Who/what are you seeing adverts about? I’ll confirm whether or not you should be seeing them and if any are spam, I’ll shut it down. BioNews is the company that owns the forums and PF News. Hope this helps!

      Sad to hear your doctor’s response regarding the FDA approved options only, but yes, somewhat not surprised…. glad you’re continuing to your own research too! Feel free to write anytime Thom 🙂

      Charlene.

    • #17513
       Steve Dragoo 
      Participant

      @debbi – I know what you mean – I observed a while before commenting…

  • #17611
     Debbi Rummery 
    Participant

    Hi Mal, ( @mal-com )

    My apologies. I did reply to you but it seems to have disappeared.

    Cairns in May is the best time to be here. Can we meet up while you’re here or are you staying in Port Douglas? My e-mail address is [email protected]

    Regards, Deb

  • #17836
     Malcolm Mann 
    Participant

    Hi Debbi @debbi Rummery

    We’re on a package deal & fly to Cairns, then transfer to Port Douglas probably shortly after arrival, I dont know how much time we’ll have in Cairns this time, but literally I know of only one other person with this insidious disease here, we’d love to be able to talk with others with this problem.

    We normally spend a bit of time in Qld caravanning for 2-3 months over winter most years, but this year we’re only doing a house sit in Brisbane and another in NZ.

    Back to topic,  the stomach ache and diarraeah does tend to take your mind off the fibrosis. I was side effect free for the first few week, now after 6 weeks they are my constant companions. I haven’t worked out what to avoid yet.

    Cheers Mal

     

     

     

  • #17837
     Thom 
    Participant

    I have been on OFEV for about 10 days 150 mg two times a day. So far no side effects absolutely zero. I hope it stays this way time will tell.

    Thom

  • #17861
     Charlene Marshall 
    Keymaster

    Definitely keeping my fingers crossed that it remains this way for you @thom! I am lucky to report that I didn’t have a lot of trouble when starting this drug either, just occasional discomfort but not even enough for me to know whether it was the Ofev or something I’d eaten – that is how sporadic it is. Will be thinking of you and hoping you remain side effect free. Thanks for the update!

    Charlene.

  • #17862
     Thom 
    Participant

    Thank you for the well wishes Charlene.  I’m hoping for the best too.

    Tony mentioned .25 cents in India! Just a short note on that.  My doctor at Yale said she purchased ofev from India for her father.  But to be safe she had the pills analyzed at Yale.  They were the same, but the dosage had to be adjusted.  Evidently the med was the same but the units were not.  How much difference does it make?  A guess a pharmacologist would know.

    Thom

     

     

    • #17864
       Charlene Marshall 
      Keymaster

      Hi Thom,

      Wow – how interesting is that! I’m glad to hear that the pills were the same after being analyzed at Yale, I would be a bit skeptical about this difference (although, when patients have no other options financially to get the drug, I can certainly understand why this option would be appealing) myself I think, so this is really good information to know. The dose could be adjusted easily enough I suppose! Thanks for sharing this, its really interesting to know and will potentially be really helpful for others as well.

      Take good care,
      Charlene.

  • #17874
     Bob 
    Participant

    Hi Charlene:

    This is a test to see if my post posts…LOL

    • #17877
       Charlene Marshall 
      Keymaster

      It passed the test @bobb, I got your post successfully 🙂
      Hope you’re doing well!
      Charlene.

  • #17880
     Malcolm Mann 
    Participant

    The stated full cost of Ofev in Australia while still ridiculously expensive is vastly different from what I’ve seen, ie. US$ 2400 per month. I pay AU$6/month as a vet, normal price $35 or so.

    Charlene perhaps we could have a guide on what to eat (and what to avoid) while on Ofev, I’ve already sworn off sourdough grain and all heavy breads. I now resort to what we called “bad bread” you know the white prepacked sliced stuff. Jan & I have been on high fibre diets for the last 30 years and Ofev people advise against a major part of my diet. I’m also not eating as much, I no longer desire large meals.

    • #17903
       Charlene Marshall 
      Keymaster

      Good morning @mal-com,

      Thanks so much for getting back to me and I hope this note finds you doing well!

      It is interesting how the prices differ for such a needed drug in the IPF world, isn’t it? Here in Canada, we don’t pay what the US does either due to our government healthcare coverage, but still have a fee. It is more reflective of what you seem to pay in AU (without the vet fee, of course). I am so thankful for this as I know some people find the costs of their medications truly prohibitive to their survival. While it isn’t a drug, right now a big piece of news in Canada is that people aren’t able to afford re-locating to Toronto for lung transplantation as this is the best centre in Canada to do lung transplantations (and one of the only ones). I read this article last week, and it broke my heart that some people are choosing to die instead of fundraise for the cost of moving provinces to Toronto…  https://www.cbc.ca/radio/thecurrent/the-current-for-march-13-2019-1.5053541/doctor-forced-to-tell-lung-transplant-patients-to-fundraise-to-pay-for-life-saving-treatment-1.5053548

      It sure would be interesting to compile a guide on what to eat or avoid while on Ofev! This could be a project I’d be curious in starting a bit down the road, as I am working right now on creating a forum for folks to compile their laser therapy results. Trying to balance a bit of work-life tasks at the moment but let’s revisit this in a few weeks and I’d be happy to help! Would that be okay?

      I typically stay away from bread myself Mal. I actually can’t remember the last time I had any bread – I usually make “mug bread” (very low carb, 90 seconds in the microwave and only 4 ingredients – egg, almond flour, butter and baking powder) if I feel the need to have something like that. I really find it helps my stomach since starting Ofev, and I have had to start a fibre supplement since Ofev actually – which is in opposition of most folks I find. I also don’t eat a lot anymore, just generally not very hungry. I do have a lot of smoothies though – do you have many of these?

      Talk to you soon,
      Charlene.

       

  • #17882
     Thom 
    Participant

    After almost 2 weeks on ofev with zero symptoms, all hell broke loose yesterday. I skipped it today because I’m still at it, will try again tomorrow hopefully it takes a turn for the best. Thom

    • #17904
       Charlene Marshall 
      Keymaster

      Oh no, I am so sorry to hear this Thom! The side effects can happen very quickly and be very unpleasant. I hope stopping it even for 12-24 hours has helped to “reset” your symptoms. I know others have had to do this. I’ll keep my fingers crossed that this works for you too! Take care, Charlene.

  • #17883
     Debbi Rummery 
    Participant

    Hi Malcolm,

    Cost of Ofev in Aust is $40.20.

    Regarding your diet, I was part of a Named Patient Program because Ofev hadn’t been approved in Australia when I started on it. The drug company produced a booklet with helpful guidelines. The most important was a LOW fibre diet and try for 6 smaller meals each day. I started on this but have now gone back to my normal eating plan and foods in moderation. I really think it’s a bit of “trial and error” until you find what suits you. We are all different in our eating habits and foods so what works for one does not necessarily work for another.

    There’s also things like pineapple which is a high fibre food but excellent at breaking up mucus. I love pineapple so I choose to eat it even though it’s not on the approved list.

    Good luck, Debbi

  • #17884
     Malcolm Mann 
    Participant

    Hi Thom your experience mirrors mine, I’m now trying to work out the safest diet. Mine is not debilitating  & hasn’t got any worse, just there most of the time. I thought the Imodium packet that came with my Ofev instructions was a bad omen.

    Debbie, if I could get sweet pineapples here they’d be on my list too, we lived in Qld for a while & I miss them. We had 5 big mango trees, I really miss them.

    CheersMal

     

  • #17885
     Debbi Rummery 
    Participant

    Hi Mal,

    Mareeba Gold pineapples are the best hahaha. Not a big fan of mango though.

    Deb

  • #17889
     Malcolm Mann 
    Participant

    Hi Debbi actually we’re up in Canberra looking after some grand kids this weekend and saw some decent looking pineapples at Fyshwick Market, I’ll get a couple before we go home.

    I have a rough pineapple top growing at home, but it hasn’t produced anything yet.

  • #17905
     Charlene Marshall 
    Keymaster

    I remember eating pineapples in Australia while travelling around @mal-com and @debbi! They were delicious, so very fresh … it might have also had something to do with the fact that while I was in Aus, my family and friends were dealing with -22 degree weather at home in the Canadian winters. This knowledge simply may have made them taste better haha! I am looking very forward to fresh pineapples while visiting Hawaii this year too. They are one of my favourite fruits!

    Hope you’re both enjoying your weekend 🙂
    Cheers,
    Charlene.

  • #19525
     Marianne 
    Participant

    Charlene and Mark –

    Got the approval today to start on OFEV.  The cost is quite high on my insurance.  I have Medicare Part A, Part B, a Supplemental Policy plus Part D for drug coverage.  Because I am still working full time even though I am retirement age it appears that most programs out there will not help with my cost for this medicine.  I am calling my pulmonary doctor tomorrow to see if they know of any ways to lower my cost.  I do not qualify for many of the programs to help with the cost as I make more money than the poverty level in the US.  It appears that the manufacturer only helps with the cost if I have no insurance, under the poverty level or have private insurance (not Medicare).  My pulmonary doctor told me that his office had the knowledge to help lower the cost.  The doctor talked to me about both medicines available and I told him I wanted to try OFEV instead of Esbreit – mainly because of the super sensitivity to the sun that is a side effect of taking Esbreit.  I cannot afford a couple thousand $ per month to take this drug.  Might have to retire to lower the cost.  Not sure what I am going to do yet.

    Did anyone else here experience high costs to take OFEV/

    Charlene – I know you are in Canada which is a whole different approach than in the states for doctors and medicine.

    Mark – did you have private insurance when you first went on OFEV?

    Thanks for all replies.

    Marianne

    • #19528
       Mark Koziol 
      Keymaster

      Hello Marianne, sorry to hear about the insurance situation. Maybe one of other forum members can chime in and offer suggestions on other supplemental programs to pay for the Ofev. I did have private insurance, however i worked for a school district and they covered everything except the $10 co-pay. This was then covered by a program Boehinger Ingelheim initiated. There was $20,000 available if I needed it for supplemental coverage. They paid the $10 co-pay each month. I know there are some programs out there and hopefully your doctor is privy to them. I do know several of our members receive their Ofev from India at a very low price. Mark

  • #19531
     Marianne 
    Participant

    Mark –

    Thanks for your reply.  I am calling the doctor when they open today.  Also going back to my insurance company today to see if they have any programs.  Perhaps insurance company can tell me what my cost would be the following month.  The Specialty Pharmacy said they cannot figure that out until I pay the first month which is $2,324.  If I am figuring the cost correctly by what they told me – the second month coverage would also be quite large then it looks like $500-600 month for the remainder of this year.  If I cannot get that cost lowered I may be forced to retire to get my costs lower.  Thanks for your input.  I did hear from another member and they suggested I start with calling my doctor’s office.  They were able to lower there cost that way.  They are also located in Canada.

    Marianne

  • #19542
     Marianne 
    Participant

    Has anyone on these forums refused the 2 drugs approved for IPF because of the cost of the drugs?  If so, has anyone used any other drugs instead of the approved drugs – Ofev or Esbreit?  What other treatment options has anyone tried?  Thanks for any thoughts you can provide me.  If I can not get the costs down for Ofev I am seriously considering not taking the drug.  Did anyone start either Ofev or Esbreit and stop it because they did not think it was helping them?  My pulmonary said it helps slow the disease down about 50% of the time.  Lots of questions and lots of decisions to make.

    Marianne

    • #19600
       Charlene Marshall 
      Keymaster

      Hi @marianne,

      I am writing this reply on behalf of Bob B. who tried to reply himself but the forums were giving him a hassle. Here is what he wrote to you/us verbatim:

      Marianne I assume you are in the United States or another jurisdiction that doesn’t have universal health care.  Charlene and I are in Canada and although we have to qualify (our condition has to meet the test of being mild to moderate) for OFEV, once we do so then it is provided free.  Like Charlene i’m not aware specifically of anyone who has refused either medication due to cost but i’m sure there has to be some people.  I disagree with the comment from your lung doctor as I doubt our government would approve this medication if it on;y worked on 50% of patients.  My specialist advises me that OFEV  is shown to slow down progression by two thirds.  that;s a far cry from only working 50% of the time.

      There have been recent posts on this forum about being able to order and import OFEV from India.  Neither Charlene or I have detailed information but if it works, the cost is something like $225 A YEAR!  I’m sure Charlene can point you in the direction of the forum member who suggested this.  Apparently it is legal to import and the medication is exactly the same but it is marketed in India under its clinical name of Nintedanib.  In the interim you should be able to call on your lung specialist to secure a start-up supply, they get samples all the time.

  • #19552
     Charlene Marshall 
    Keymaster

    Hi @marianne,

    I haven’t heard of folks declining the drug due to it being cost prohibitive, although I certainly could see that happening for some folks. They’re so expensive! For people who are on Esbriet, I’ve heard stories of the maker of the drug (Genetch) giving “trials” to patients but ongoingly so they are never without it. I haven’t heard of this happening for people with Ofev though, although there may be a way to navigate the cost. Does anyone else know? I have heard of folks declining the drug due to the side effects and the quality of life that is compromised as a result. I’d be curious to hear from others on this topic as well, thanks for bringing it up Marianne.

    Regards,
    Charlene.

    • #19565
       Steve Dragoo 
      Participant

      @marianne

      Hi Marianne,

      I have not refused because of the cost but for the side effects.  There is a pirfenidone supplier in India and their cost is very low.  I can send you the link I saved if you wish, however, I know nothing about them yet they seem to have a good rating.

      I do take supplements and enzymes that help and there are several different forums here that can help you understand uses better.  It takes a while to understand these things and I enjoy additional research even after starting something as there are ongoing new useful insights.

      Briefly, I do/take: Hot lemon water in the morning two big glasses and wait 20 minutes before eating/drinking anything else, sometimes I include crushed garlic. Diet, water, and exercise – oddly my O2 stays slightly elevated for a couple of days after mild to moderate exercise at the gym. Daily: astragalus, serrapeptase, nattokinase, D3 and K2m7, a good B vitamin complex, Ubiquinol (q10 superior form many claim), alpha lipoic acid time release, omega 3, niacin time release. Some of these are to help with PAH, some I have been taking a long time. Finally, use a class 4 laser when I am stateside (can’t find one in the Philippines) and I recently started Wei laboratories herbs (expensive but short term) because of no laser.

      Others are looking at other herbal combinations and one that shows promise is Rosavin, it has several names and I think different combinations.

      That’s a lot so please ask or PM me if you want.

      Steve

  • #19623
     Marianne 
    Participant

    Hi all –

    Today has been a busy day.  Spent part of the day on the phone reaching out to various foundations for help on the co-pay and cost of OFEV.  Basicially, I was told I did not qualify for assistance.  I called my doctor’s office and left a message.  It wasn’t long before the doctor himself was calling me back.  He asked if I had spoken with the manufacturer.  I told him I had called them and was turned down.  I told my doctor that I could not afford to pay the price my insurance quoted me.  He told me he would reach out to a contact he had at the manufacturer and see if they would accept me into the program.  He also told me he was going to see if I had a lower copay on Esbreit.  For now we are in a holding pattern.  He definitely wants me to participate in a trial this summer.  That’s all I have right now.

    Hope everyone is having a good day.

    Marianne

    • #19633
       Mark Koziol 
      Keymaster

      Hello Marianne, let’s keep our fingers crossed your doctors connection can come through for you. I honestly do not know what the process is for these drug manufacturers. When I received the monies they were not going by income. I think they arbitrarily gave me the monies because the drug was recently approved. I know my doctor had to complete extensive paperwork for my insurance to pay. I only had a $10 co pay. I am sorry you have to go through this adversity.

  • #20492
     Marianne 
    Participant

    Hi Charlene, Mark, John L. and everyone –

    I am starting Ofev this weekend.  The medication will be delivered tomorrow.  I found no help at all on the cost of the medicine but decided to take my Social Security while still working.  I will use that to help pay for the cost of the medicine.  Seriously thinking of retiring by the end of the year.  Then I should qualify for some financial help with the cost of the medicine.  Also, my first grandchild is due in January 2020.

    Hope everyone has a great weekend.

    Marianne

     

     

    • #20493
       Mark Koziol 
      Keymaster

      Hello Marianne, first of all congrats on you expecting your first grandchild. Very good news to hear. Please keep us updated on how you are adapting to the Ovef. I hope for the best. Remember, because others have had problems doesn’t mean you will. Keep in touch, Mark.

    • #20513
       Charlene Marshall 
      Keymaster

      Goodluck Marianne!
      Keep us posted and take good care 🙂

  • #20494
     Cynthia 
    Participant

    I started two weeks ago and side effects have been minimal. A little nauseous for a few days but no vomiting or diarrhea.

    My doctor said the efficacy rates of Ofev and Esbriet are the same. It was my choice so I went with Ofev because it doesn’t have the sun exposure issues and it’s just two pills a day.

    My team of doctors includes a rheumatologist who believes I might have autoimmune issues. My pulmonologist, who specializes in ILD, thinks the CT scan is much more indicative of IPF. In choosing a treatment he said that if we go with Ofev or Esbriet there’s some evidence it will also help if my fibrosis is in fact autoimmune related. But if he uses the drugs normally used to treat autoimmune diseases, it could actually hurt me if it’s IPF. There are some clinical trials going on now that suggest Ofev coupled with Cellcept have been really effective for those who are autoimmune, so it might not be long before Ofev is approved for diseases other than IPF.

    I happened to come across this article recently which really gives me hope that Ofev will extend my life. They estimate the mean survival rate of those taking Ofev could be 11 years. That would be fantastic for those of us who are diagnosed in our 70s or 80s.

    IPF Patients Live Longer on Ofev Compared with Placebo, Analysis Suggests

    • #20498
       Mark Koziol 
      Keymaster

      Hello Cynthia, thank you for the update and providing the link to the research article. Mark

  • #20500
     Thom 
    Participant

    I’ve been on ofev for several  months now.. I had no reaction for the first two weeks than all hell  broke loose.  I was told to stop for a while.  My dr suggested 100 mg instead of the 150.  For about 2 weeks I was vomiting and diarrhea.  It slowed down, but stomach problems.   Dr increased omeprazole to 40 mg.  It helped but not a lot.

    Thank you Charlene!  She suggested I take 1/2 tablet of imodium with ofev.   Since than no problem.   I wake up, eat banana, take med.  Hour later breakfast  and I’m good to go.  And I dont mean to bathroom.  Thanks  Charlene

  • #20514
     Charlene Marshall 
    Keymaster

    Hi Thom,

    Thanks for writing – it is so nice to hear some positives around Ofev, as I know many folks have difficulty with it and can feel as though it is unmanageable. In some cases I suppose it is, and by no means do I mean to negate the difficulty you had with it after a couple of weeks, it is just nice to hear you’re managing with the medication a bit better 🙂 So glad for you! Important to note for folks reading this: it is the sublingual immodium tablet that I’ve found most effective. Thanks again for sharing Thom and really glad this option has helped.

    Enjoy your weekend!
    Charlene.

  • #20518
     Thom 
    Participant

    @marianne please email me.

    [email protected]

  • #20523
     jaime L manriquez 
    Participant

    Hello Charlene, this is Jaime, the one is having lots of problems with the excess of phlegm, almost unbearable, still quite heavy, but the reason Im writing is to thank everybody in this forum ,specially you for caring so much, wanted to give you some of my experience with OFEV.   I was diagnosed IPF back 1n 2012, but it didn´t bother me until fall 2017, after a long 3 months brochitis, then I went to see dr, he give me the choice of both medications that you mentioned time ago, Started on OFEV because was the newest in de authorized market. After 2 months of traetment a gave up couse terrible side effects, among them , Diarrhea,  headaches, muscles pain, dry mouth..etc. Now I´m not taking any antifibrotic, but as per Dr. advice I,m taking Atorvastatins, 1 a day and 2 Metformine, so far so good, not oxigen yet , but close to, beacouse I cough too much after a small effort.

    best regards to all of you

  • #20535
     Charlene Marshall 
    Keymaster

    Hi Jaime,

    Thanks for writing and letting us know how you’re doing, although I wish it was a bit better news regarding the excess phlegm. Have you found anything that helps alleviate it at all? I’m so glad you feel supported in this forum, it is filled with lots of wonderful people who truly do care and I’m happy you’ve found us.

    Thanks for sharing your experience with Ofev as well. I agree with you regarding the nasty side effects, can be so difficult to manage but I am holding out hope that some members are finding them manageable. I am on Ofev as well and doing okay so far, hoping this continues. Is your Metformin prescription new? There has been a lot of discussion around this but just recently a study was released on the benefit of Metform for IPF in particular so I’m curious about physicians exploring this. I hope the two drugs continue to work! Will be thinking of you Jaime, thanks for writing to us.

    Charlene.

    • #20542
       Steve Dragoo 
      Participant

      @jaimeluciano

      Jaime – Happy to discuss serrapeptase with you. It has knocked out almost all phlegm. – Steve

  • #20540
     jaime L manriquez 
    Participant

    hello Charlene, no luck with my Phlegm business, during the day isn´t that bad, when the bedtime comes is my problem, made me cough a lot, but will tell you about Statins and metformin….My pulmunologist prescribes me the Astorbastatin, he said work pretty good on inflamation of the respiratory tracks also.(cholesterol medication) Metformin I take since a while for my pre-Diabetes.  Some of these drugs is doing good to me. Not 100% but doing something…plus a couple of kiwis every day, lots of fresh garlic, red onions..on my every day diet. Im pretty alert on the new stuff  on tests we could benefit from.

    Best regards for you Charlene, and the rest of our wanderful team of writers, God Bless you all

    • #20552
       Charlene Marshall 
      Keymaster

      Hi Jaime,

      Thanks for your reply, although sorry to hear you haven’t had much success in reducing the phlegm. What a pain, especially during bed time when our bodies need good quality sleep from the exhaustion of this disease! Thanks so much for sharing about the medications, I am going to keep an eye/ear out for mention of both of these as I have heard quite a bit about Metformin and IPF in particular lately. Glad you’re staying alert to new options that may help our situation with IPF, this is really important for the ability to advocate for our healthcare needs. Kudos to you! Keep in touch and wishing you all the best.

      Charlene.

  • #21232
     Andrew (Randy) Hicks 
    Participant

    Hello,

    I am starting OFEV tonight.  I was diagnosed about two months ago with moderate IPF and after blood tests, breathing tests, and a lot of paperwork my prescription arrived today.

    I have read a lot about side affects and diet on the forums, so I am going to be really careful with what I eat and all.  I am still working full time as a military electronics instructor so I would hope I will not have diarrhea of too much nausea when I am teaching tomorrow.

    Since I am new as far as this disease goes I don’t have much to post yet.  I am open to advice and will share any experiences I have.  Have a great evening everyone.

    • #21238
       Mark Koziol 
      Keymaster

      Hello Andrew, I hope your first evening on OFEV went well. With my experience I chose to eat 5-6 small meals per day partly because I also had to lose weight to be eligible for a transplant. I made sure I had a protein in my belly and also a carb. You will find your comfort zone. Best wishes and thank you for your service. Mark

  • #21264
     Charlene Marshall 
    Keymaster

    Hi @andrew-hicks, I am posting this on behalf of another forum member (Bob – @bobb ) to your question about Ofev. He is having a hard time accessing the forums, but here is his reply verbatim: “Hi Andrew:  Like you I was more than a bit concerned about the side effects of OFEV but I have been on it for over a year now at the 150mg dosage and the only side effect I have is MILD diarrhea.  You are going to get varying opinions on here and mine will differ from Mark’s.  My approach to this medication is not to let it, or the IPF for that matter, control my life.  I have not varied my diet in any way since I started using it except for my evening pill which I take about 9pm (outside of mealtime) when I usually make sure I have a bit of food in my stomach.  In my case I eat half of a large muffin and a cookie.  As far as the diarrhea in concerned, as long as it remains mild ( say 2 or max 3 movements a day) I really do nothing.  You can try Imodium but it doesn’t work for me.  With my lung specialist’s agreement, if the diarrhea  get worse, I come off OFEV for several days to let my bowel settle down.

    Hope this helps and go luck going forward.

    PS I’m in Canda.  I don’t know where you are but thank you for your service”

  • #21265
     Andrew (Randy) Hicks 
    Participant

    Thanks Mark, Bob and thanks for passing Bob’s post Charlene.  The first night went ok.  I did have to get up frequently for Diarrhea.  Before work I took some Imodium before leaving the house.  I was worried about how I was going to do at work, but I drank some orange juice and ate a banana, took my capsule (I am on 100 mg) and then ate another banana and washed it all down with water.  I was fine all day other than having to pause and remind myself to slow down.  Tonight I had something to eat as soon as I got home and then ate when I took my pill.  I take mine at 7 PM because I go to bed at 8 PM and get up at 4:45 AM.  I then take my morning pill at 7 AM while at work.  I’d like to thank you all for sharing.  It looks like there are a lot of differences in people’s experiences, and I realize it might take me a little while to find what is best for me.  Thanks again.

    • #21302
       Mark Koziol 
      Keymaster

      Hello Andrew, I like the idea of eating a banana with your meds. I currently do this with my transplant meds. I’m glad the first day went well for you. This is a good sign. Best wishes, Mark.

  • #21304
     Andrew (Randy) Hicks 
    Participant

    Thanks Mark,

    So far I have not had anything bad like diarrhea after the first night.  I did have a little cramping in my hands but drinking more water took care of that.  I still take the OFEV with a banana, but only one now.   The banana’s were giving me too much gas ( a little embarrassing).  I am glad that I made it through the week with no major issues at work or at home.  Have a great weekend.

    • #21305
       Mark Koziol 
      Keymaster

      Hello Andrew, I forgot about the cramping the Ofev caused. Your statement just reminded me. I drank water to combat this side effect and always had Gatorade on hand for the extra electrolytes. The several times I battled gastric distress i used pedialyte. You have a great weekend as well. Mark

  • #21308
     Andrew (Randy) Hicks 
    Participant

    Thanks Mark,

    I always drink a lot of Gatorade, sometimes instead of water.  I guess if I cut down a little on the Gatorade and coffee, and drink more water I should be fine with the cramps.  I’ll keep the Pedialyte in mind if I get gastro problems again.

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