Starting Ofev

[Bill]

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.

 

[Pauline Sizemore]

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.

[Charlene Marshall]

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.

[Gina]

Hi Pauline,

I’m glad you made it through the difficulties you were having. I was diagnosed with IPF in May, 2021. I have been on Ofev since July with minimal side effects. I am currently transitioning from 100mg to 150mg twice daily. My question to you is what Medicare part D plan is covering the cost? My current plan leaves me a $3000 copay. Fortunately I have a foundation covering the copay for now, but I don’t know how long that will remain. Thank you for your post.

[Annette]

Hey Gina,

I see on this forum that most of the posts are 4-5 years old but I was just diagnosed with UIP in the beginning stage in January 2022 . I just started taking Ofev 150 mg the first week in April and have been working through the side effects. The worst part was the diarrhea but I think I have it figured out. I was prepared for the worst but it really hasn’t been that bad. Ive lost 15 pounds, which I needed to and it is a good thing. I realized that it depends on what I eat and/or drink that will cause that. Since I am just beginning, I’d like to hear how it’s going with you after doing it for awhile.

Thank you, Annette

[Gina]

hi Annette,

I have been on Ofev 150 since January. I also deal with diarrhea and occasional nausea. The nausea usually passes within 15 minutes. The diarrhea, unfortunately, has gotten worse. I am still experimenting with different foods. I also just started a new clinical trial, so I’m thinking these new pills are a major factor.

My PFT and hrct have improved, so everything is worthwhile in my mind. I’m not sure if this is helpful because of my involvement in clinical trials as a variable in my tolerance or intolerance of the Ofev. Hang in there and stay positive.   Gina

[Annette]

Thank you for replying. I will be having my first PFT in August so I am anxious to see how that goes. I have no idea what an HRCT is but I’m glad your health is moving in a positive direction.

Do you know the cause of your condition. I have been racking my brain trying to figure out where this UIP came from. I’ve never been a smoker but I do have seasonal bouts with bronchitis. I also used to live in a place that had high radon count. Not sure about any of that.

Good look with the trial meds. What is it like?

[Gina]

Hi Annette,
HRCT is a high resolution CAT scan. They are diagnostic for IPF. UIP (usual interstitial pneumonitis) as seen on the HRCT confirms IPF. Idiopathic pulmonary fibrosis has no known cause, hence “idiopathic.” Mine is familiar as well. My brother was also diagnosed recently. Radiologists can differentiate between UIP vs NSIP (nonspecific interstitial pneumonitis). NSIP has various other medical causes diagnosed with further testing. UIP is specific for IPF.
Good luck with your PFT. The important number is the DLCO. This will give a good indication of how well your lungs are able to exchange oxygen and carbon dioxide. I think my daily exercise is what is maintaining my DLCO.
Are you planning on starting an anti fibrotic?

Sent from my iPhone
Gina

On Jun 21, 2022, at 7:58 AM, Pulmonary Fibrosis News Forums <<span dir=”ltr”>[email protected]</span>> wrote:

Annette wrote:

Thank you for replying. I will be having my first PFT in August so I am anxious to see how that goes. I have no idea what an HRCT is but I’m glad your health is moving in a positive direction.

Do you know the cause of your condition. I have been racking my brain trying to figure out where this UIP came from. I’ve never been a smoker but I do have seasonal bouts with bronchitis. I also used to live in a place that had high radon count. Not sure about any of that.

Good look with the trial meds. What is it like?

Post Link: <span dir=”ltr”>https://pulmonaryfibrosisnews.com/forums/forums/topic/starting-ofev/#post-32384</span&gt;

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Starting Ofev

[Millie]

Has anyone tried Metamucil for the diarhhea?  I was very surprised when my doctor recommended it as I thought it was only for constipation.  I was told that it bulks you up and it really worked for me.  Give it a try and let me know how it goes.

[Charlene Marshall]

Hi Millie,

Oh this is interesting, thanks for sharing! I had similar thoughts as you but glad to hear it’s helpful. I know a lot of people struggle with diarrhea on Ofev so this is good information to have and share.
Take care,
Char.

[Gerry T]

Just curious to know what patterns if any you noticed when/what to eat and GI symptoms?  I’ve been on Ofev for 4+ months, the first 3 of which were free of any side effects.  Apart from taking it with food, what else has helped you?

thanks

Gerry

[Millie]

I started taking ofev in March–was diagnosed in December 2021.  My doctor sent in my tax return with the RX and I qualified to receive ofev free.  I guess that is why he chose that drug over espret.  I am on 100 mg and will be moving up in my dosage.  I tolerate 100 very well.  I don’t know if it is effective in controlling the fibrosis.  My doctor tells me that the trials done were on the 150mg twice a day.  I suggested to my doctor, and he agreed, that I take one 150mg of ofev once a day and one 100mg of ofev once a day  to see how well I tolerate it  initially.  If all goes well, I will move up to the 150mg twice a day.  I’ve been taking 30mg of zinc daily also.  I have severe scarring.  The fibrosis showed up on an x-ray I had 3 years ago but I was never told about it.   I am on oxygen 24/7.  However, I feel very good overall.  I have enjoyed excellent health and am 82 years old.   I love swimming and did laps 3 days a week until all this happened.  That is one thing I can no longer do and miss it very much.  I hit the gym every day as I always did and exercise with oxygen.  On 2 liters my numbers are in the 90 to 95 range.  I take the oxygen off  in the evening while watching TV and my oxygen level stays in the 90-95 range.

[GratefulDeb]

That’s great news!!!

[Pattye]

Congratulations! I start Ofev anyday now; hoping to wean down on my oxygen use as well as many of us do! So wonderful to hear your story! Thank you!

[Tony Buxton]

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

[Charlene Marshall]

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.

 

 

 

[Tina Casini Weedon]

Hi Charlene,

I just started ofev, so I’d like to answer your ???

1. I started ofev about 4 months after being diagnosed.

2. I can’t remember if he told me the severity of PF but I new

it was mild because the only symptom was a large amount of mucus, no breathing problems.

3.  Dr. said between the two ofev was more effective drug.

4. I have just taken my third pill.

5. I have been pleasantly surprised that I have no side effects other then some constipation. Hopefully when the drug is fully in my system I will remain side effect free.

6. I don’t have a singular cause for my PF, but there are numerous reasons  that could have caused it. This is only my opinion though.

1. Thank you for this site. It thoroughly covers all aspects of this disease & it is comforting to hear from people like myself.

[Paul Polidano]

Hi Charlene

Thank you for all the work you do in supporting us with IPF etc.

Please find my response to survey re ‘Starting OFEV

How long after your diagnosis of PF/IPF did you start taking Ofev?

• Stated OFEV immediately on being diagnosed.

When you started Ofev, had your Doctor shared with you whether your PF/IPF

was mild, moderate or severe?

• Doctor mentioned it was mild.

When being prescribed Ofev did you ask or did your Doctor offer to explain why they chose this drug over Esbriet?

• Dr advised the side effects of both Esbriet and OFEV and since Dr seemed to favour me going on to OFEV (because of possible horrible skin rash side effects -please see further comment below), I opted to go with OFEV.

How long have you been on Ofev?

• Started on OFEV 7 April 20 -immediately on being diagnosed, but due to severe nausea and constant diarrhea, Dr switched me on to Esbriet approx. 4 months later (mid July) which I lasted on, only until end of Nov, due to horrible skin chapping (back of hand mainly) and terrible itch developing on top and back of my head.
• Coupled with the fact that my nausea and diarrhea continued while also using Esbriet which I couldn’t deal with, I asked my Dr to put me back onto OFEV which I started on again in late Nov 20 (@ 150mg twice daily).
• Due to my frequent nausea and continued diarrhea, my Dr reduced my dosage to 100mg twice daily, which almost eliminated my frequent nausea as well as slightly reduced my diarrhea to a more ‘comfortable’ (manageable) level.

Can you outline some side effects you have experience as a result of being on Ofev?

• Side effects – as indicated above. However, it is well noting that having just (6 weeks ago) stopped OFEV completely for 10 days (due to interstate holiday), my nausea and diarrhea disappeared completely.
• After resuming again @ 100mg once daily for the first week and then back on to 100mg twice daily from then on, although my nausea and diarrhea reappeared frequently for the first week, when resuming the full ‘200mg daily dose’, I was extremely pleased to note that over the last couple of weeks both my nausea and frequent diarrhea, seemed to have almost disappeared completely. -just an occasional occurrence of diarrhea (-possibly because I have also been diagnosed as being lactose and fructose intolerant).

Do you have PF (with a known/suspected reason for the disease development) or IPF?

• Diagnosed as having IPF.
• Regards PaulP – Down under -Melb Aust.

[Charlene Marshall]

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

[Jean Benford]

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.

[Charlene Marshall]

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.

[Tony Buxton]

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

[Charlene Marshall]

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.

[A. Houghton]

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

 

 

[Gina]

Hi Charlene and Jean,

i was granted funding from

TAFCARES. .Org (the assistance foundation) multiple other foundations said I made too much money. Check them out online.

[Patricia Williams]

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

[Jacki Baum]

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.

 

[Charlene Marshall]

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 🙂

[Dick]

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.

[Charlene Marshall]

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.

[Patricia Williams]

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.

[Patricia Williams]

I went through a program called Open Doors, it is paying full price of my Ofev. I received my meds through Humana. A nurse calls me every month to check on me and they schedule when I want my med delivered. I recently had to go on 100 instead of the 150. The diarrhea was very severe, I am still adjusting to the 100, I hope I can tolerate this one.

[Charlene Marshall]

Hi Patricia,

Thanks for writing to us and sharing this precious resource. I will look into Open Doors more and I hope others do too. Do you know if it is just a US-based program, or potentially beneficial to those outside of the US as well? So glad you have this resource to help you, and I hope the 100 mg dose of Ofev is more tolerable for you. I’ve heard that 100 seems to be the “magic number” as opposed to the 150 mg. Keep us posted and I will be sending you positive thoughts and prayers!

Charlene.

 

[Jacki Baum]

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

[Dick]

Jacki, thank you very much for the info.

[Charlene Marshall]

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.

[A. Houghton]

Thank you, Jacki, for this valuable information.

[Dick]

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

[Charlene Marshall]

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.

[Patti]

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!

[Charlene Marshall]

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.

[Patricia Anne Hughes]

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

[Charlene Marshall]

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.

An Unusual Cough Remedy for Patients with Pulmonary Fibrosis

[Brian Thomson]

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.

 

.

 

 

[Charlene Marshall]

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.

[Steve Dragoo]

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

[Charlene Marshall]

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.

[Patricia Anne Hughes]

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.

[Charlene Marshall]

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.

[Steve Dragoo]

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

[Charlene Marshall]

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.

[Scott Felland]

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?

[Charlene Marshall]

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.

[Karl]

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.

[Charlene Marshall]

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.

[Kenneth Corsette]

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.

[Charlene Marshall]

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.

[Steve Dragoo]

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

[Charlene Marshall]

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.

[Bob]

@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.

https://pulmonaryfibrosisnews.com/2017/09/12/trial-shows-that-ofev-and-esbriet-combo-is-as-safe-an-ipf-therapy-as-its-individual-components/

[Steve Dragoo]

@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

 

[Charlene Marshall]

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.

[Charlene Marshall]

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.

[Bob]

@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.

[Charlene Marshall]

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.

[Steve Dragoo]

@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

 

[Charlene Marshall]

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.

[Steve Dragoo]

@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

[Steve Dragoo]

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

[Charlene Marshall]

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

Charlene.

[Bob]

@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

[Charlene Marshall]

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.