• Best way to take Esbriet

    Posted by Shaw Jennings on February 13, 2018 at 5:50 pm

    Hi All,

    I should start my treatment with Esbriet as early as this afternoon and I am concerned that I won’t be able to tolerate it.  Can anyone share their initial experience – good or bad – and provide some tips that proved sucessful?  Also, did it take about 3 months for the side effects to go away as Esbriet claims?

    Shaw

     

    Charlene Marshall replied 5 years, 7 months ago 18 Members · 110 Replies
  • 110 Replies
  • Charlene Marshall

    Member
    February 13, 2018 at 6:56 pm

    Hi Shaw,

    Thank you so much for posting this topic. What a great post! I actually never was on Esbriet, when my disease progressed to the point of needing an anti-fibrotic medication, I actually started right away with Ofev. I do have a friend who received his transplant in December 2015 but was on Esbriet until he received his new lungs. I can connect with him directly about this if you’d like? He is wonderful and dedicates a lot of his time to helping support other patients, including myself, with IPF. I can email him your question and get his response back to you, if this would be helpful? He is not yet a part of the forums but I know he is going to sign up when he can. In the meantime, I could ask him and get back to you… let me know if you’d like me to do that.

    We have also taken your question and boosted it (anonymously) to our social media pages and I’ll keep an eye on the responses and post them back to you here. I know it is so helpful to receive information from others, so I’d be happy to help with this. Sorry I can’t share my own experience with you.

    Thanks so much again for posting and goodluck with it. Please let us know how you make out.

    Sincerely, Charlene.

    • peppermom

      Member
      May 2, 2018 at 8:17 pm

      Hi Shaw.  Just a quick note on my experiences on taking Esbriet.  I think that there was a tremendous amount of support from an organization called ‘Inspiration’, based out of Ottawa, Canada for we Canadians.  The nurses in the program were sure to phone me and talk me through how to begin taking the medication, one pill – three times a day for the first week, and being sure to take them with food.  Otherwise there could be stomach issues. (I don’t need to be told that twice).  I never had stomach issues and that may be why…  I am one of those people who could easily come down with some or all of the contraindications that they warn about, so I didn’t bother to read the pages of things that COULD happen while taking Esbriet and decided to just mark down those situations that I did have happen.  Other than some indigestion if and when I took the three pills (beginning the 3rd week) too close together without food in between then I had suffered from that. Not often and tums and rolaids managed to keep me well.  I found a hot drink didn’t really help a lot, better to have a cold one.  If I took the hot drink too close after the pill then it kind of melted the capsule and it did cause some indigestion. Not a cold drink though.  Other than that no real problems.   I have even had a rum and coke some evenings, or a glass of wine.  Not a problem with that either, except my ears turn bright red and I have a bit of {global warming} flushing. That sometimes happens after I get into bed also, but only after a glass of wine or r & c.  I hope you have a good time and feeling that the Esbriet helps you.  I believe it has helped me.

       

      • Charlene Marshall

        Member
        May 3, 2018 at 3:53 pm

        Hi Joyce,

        Thanks for sharing your experience with starting Esbriet with so much detail. I know it will help others if they read this thread in future, about starting this medication. I know your message was for Shaw, but just a quick question for you…. how did you hear about the ‘inspiration’ organization in Ottawa? Is that where your treatment is (so sorry if you’ve told me this already and I’ve forgotten) or is it information you obtained from the Canadian Pulmonary Fibrosis Foundation? I’d love to just keep this in mind for other Canadians looking for more information on starting Esbriet, but don’t want to unintentionally point them in a wrong direction.

        Thanks in advance for sharing!
        Charlene.

      • michael-lamkin

        Member
        July 10, 2018 at 12:24 pm

        Hi Joyce and all other commenters on this subject.

        Thanks for the information regarding Esbriet. I just received the medication and will start taking by the end of the week. My doctor gave me the impression the side effects were pretty bad by ticking them all off and giving me the impression I would have them all.

        Thanks again for helping to put my mind at ease.

      • Charlene Marshall

        Member
        July 11, 2018 at 7:43 pm

        Goodluck with starting your Esbriet this week Michael. I hope it goes as smoothe for you as some of our other forum members, and that the doctors side effect warnings were just precautionary. Hope you make out okay, and please reach out if you have any questions/concerns with the medication, lots of people are on it (I’m on OFEV, not Esbriet) and I know they would be willing to help you if they can.

         

        Take care,
        Charlene

  • Charlene Marshall

    Member
    February 13, 2018 at 8:08 pm

    Hi Shaw,

    I hope your second support group is going well. As promised, I just wanted to share with you a comment that was responded to after we annonymously posted your questions about others’ experience with taking Esbriet. Here is a response from Joyce:

     I have been taking Esbriet since first of December 2017, I am now on maintenance dosage (9 pills daily). I too was very concerned that my body would not accept the dosage but found if I eat meals and space them 6-7 hours apart I do not have problems. Not realizing I needed to space the dosage about 7 hours apart with 30 min on either side, I took two dosages within 2-3 hours of each other, but only had to do it once to learn. I was very sick with vomiting, heart burn and inability to sleep. Now I’m looking forward to another CT and see if Esbriet has slowed the progression. Also, completed pulmonary rehab, not only do I feel better from going through the program but learned a lot too. Hopefully your experience (not counting my one goof) will be as good as mine. Good luck!” 

    Hope this helps a bit 🙂

  • Charlene Marshall

    Member
    February 14, 2018 at 3:48 am

    Hi Shaw,

    Here are some more wonderful responses to your earlier question(s) about others’ experience with Esbriet that we anonymously posted to see if folks would answer. I’ve copied and pasted them below for you. I hope this helps! Did you end up starting on it today?

    Marilyn wrote: “I’ve been on Esbriet almost three years in June, started with 9 aday with a cracker every eight hours, this is working for me, my lungs haven’t gotten worse, I don’t need oxygen during the day, only at night when sleeping, this drug is working for me, my air has been set on 3 all this time since I started, it’s wonderful”

    Ann wrote: “I have been taking Esbriet for 3 years and take 9 pills a day and have remained stable. No oxygen yet. In the beginning I had problems with an upset stomach but by eating half my meal and then taking the Esbriet that has resolved. I also schedule my meals at least 4 hours apart. I also became sun sensitive to the medication and now wear sun gard clothing and hats when out in the sun longer than 10 minutes.Hope this helps”.

    Luciane wrote: “My son takes only 6 a day because he could not tolerate it at first. He takes 2 after meals. He is stable”

    Betty wrote: I had major heartburn and indigestion with Esbriet. Switched to Ofev and am tolerating it.”

     

    Charlene.

    • Charlene Marshall

      Member
      February 14, 2018 at 4:36 pm

      Hi Shaw,

      Here are two more posts from your question regarding Esbriet on our Facebook page (we posted in anonymously). Hope this helps!

      Paul wrote: “My doctors never gave me a chance to use it and then six months later I had a double lung transplant. I went downhill quick. Welder!!! Lots of poisonous smoke. every day for 35 years. And grinding Metal dust!!!”

      Tammy wrote: “I made it to the 3rd week but I have a rare GI disorder called chronic intestinal pseudo obstruction and Gastroparesis which is basically gut paralysis. Esbriet slows gut motility further so I was having much difficulty with it and had to discontinue it. I was disappointed I couldn’t tolerate it.”. 

       

      Charlene.

  • Shaw Jennings

    Member
    February 14, 2018 at 10:00 pm

    Joyce, Marilyn, Ann, Luciane, Betty, Paul, Tammy and Marlene –

    Thank you so much for sharing your experiences with Esbriet – good and bad.  They have given me the confidence to begin my treatment this morning.  I have now taken two pills, both with full meals.  If anything I only sense very minor nausea.  I suppose it will take a few days or more for my system to fully respond to the meds so I am not assuming that it will be smooth sailing.  At least for now, I am feeling ok.  I’ll report back in a few days.

    BTW did anyone’s side effects subside after three months?

    Thanks again,

    Shaw

     

    • Charlene Marshall

      Member
      February 15, 2018 at 2:01 am

      Hi Shaw,

      Thank you so much for connecting back and letting us know how your tolerance of the first few pills has gone. I was thinking about you today, hoping that it went well and was eager to hear from you. I will pray and hope for you that the side effects remain mild and that you don’t experience too much discomfort, nausea, vomiting, etc.

      I think it is amazing how responsive people are on this forum, especially if their experience can help someone else so I wanted to ensure everyone hears my: thank you! I feel a lot more comfortable now too knowing that I can post a question here and that likely people will respond with real-life understanding and experiences.

      Shaw, how many people ended up being part of the support group you attended, that you were telling me about? I hope it was helpful and the topics were relatable?

      Charlene

  • judi-pittman

    Member
    February 14, 2018 at 10:31 pm

    My husband has now been on Esbriet for about six months.  He hasn’t had any side effects at all.  He doesn’t seem to have an appetite in that he doesn’t ‘want’ food but eats it when we fix it.  He has however lost about 10 pounds since June.  Since we’re new at this whole thing, the advise may not be there from us; in fact, more likely we’ll be asking questions but I’d like to contribute comments when I can.

    • Charlene Marshall

      Member
      February 15, 2018 at 2:05 am

      Hi Judi,

      Thank you so much for joining the PF forums and for your contributions to this topic and discussion. We’re really glad you’re here!

      When I first started my anti-fibrotic medication, I also experienced ‘not having any desire to eat’, but I also knew I had to to fuel my body to fight the disease. I am not on Esbriet, but Ofev, although I am always curious to hear about people’s experience with both medications. Would you guess that the weight loss is from not having much of an appetite, or maybe it is a side effect of the drug? Please share if you’re comfortable.

      Has your husband had a follow up since the 6 months of him being on Esbriet? Just curious to hear if by comparison it appears to be slowing down the disease progression. Perhaps still too early to tell?

      Thanks again for sharing and joining us!

      Charlene

  • Shaw Jennings

    Member
    February 15, 2018 at 12:13 am

    Hi Judi,

    Glad to hear your husband hasn’t experienced any problems with his meds.  Hopefully, losing 10 pounds is a good thing.  Also, hoping that his progression has slowed or possibly stopped.

    Best regards,

    Shaw

     

     

  • aishia-moaishia

    Member
    February 15, 2018 at 1:39 am

    Hi Shaw,

    I am new to Esbriet as well. I just began taking it on Feb 4th. I am mid week 2, and taking 2 pills, 3 times per day. I am typically the type of person that if “stomach upset” is a side effect I will most certainly suffer from it. I have been so fortunate I have had zero problems.  I always take my medication with a meal and I eat 1/2 of my meal, take med, eat second 1/2 of my meal. I also try and drink a glass of water as well. I am hopeful that as I continue next week to 3 pills 3 times per day that my luck continues and I remain stomach upset free. I have been playing around with how much food to eat and just this morning my breakfast was a banana and a cup of coffee and I did not have any issues.

    Wishing you the best of luck!

    • Charlene Marshall

      Member
      February 15, 2018 at 2:10 am

      Hi Aishia,

      Thank you so much for joining the PF forums and for contributing to the discussion on Esbriet by sharing your experiences. I’m really glad to hear that you are currently free of stomach issues that sometimes are expected with this type of medication. I will pray that continues for you!

      When you mentioned that you usually have a glass of water with your meal, do you take a full glass of water after taking your pills to wash it down, or do you mean a whole glass of water with your meal? Just curious if a side effect of Esbriet is a terrible taste left in your mouth. Unfortunately, I have a couple medications that leave me with a metallic taste in my mouth that is really hard to get rid of.

      If I may ask, do you have IPF or a type of PF with a suspected/known cause? I look forward to getting to know you more and sharing in future discussions that can benefit us both, and hopefully other members of the forum as well.

      Cheers,
      Charlene

  • aishia-moaishia

    Member
    February 15, 2018 at 2:58 am

    Hi Charlene,

    I am so happy that I have stumbled across the PF forums so early. The reason I take a full glass of water is because once upon a time I was taking a different medication (unrelated to PF) that also had stomach upset as one of it’s major side effects. Drinking a glass of water with it really helped to avoid the stomach issue so I thought I would try it with Esbriet. Typically I eat half my meal, take my med, drink half my water, eat the other half of my meal and finish my water with it.

    As far as I know I have IPF. This is a very new diagnosis for me. I was diagnosed with Interstitial Lung Disease in 2015. Just recently (end of December) my pulmonologist has diagnosed me with IPF and referred me to Seattle, to be seen at the UWMC Interstitial Lung Disease Clinic and put me on Esbriet. My appointment is in 2 weeks.

    • Charlene Marshall

      Member
      February 15, 2018 at 6:12 pm

      Hi Aishia,

      Thanks so much for clarifying for us how you best take Esbriet, I would imagine your personal experience and sharing will benefit many others on this forum. I am also very glad that you found us so early!

      Did you have symptoms of a lung disease before your interstitial lung disease diagnosis in 2015? I’ve been speaking to many individuals (including a colleague, just yesterday actually…) who shared with me that his lung disease was discovered as a result of liver function testing. It was really interesting to hear him talk about not having any symptoms, like shortness of breath etc? This disease really can manifest itself in such different ways for everyone. Do you have any history of lung disease in your family?

      Best of luck with your appointments in the upcoming weeks. If you have any questions you want answered or are thinking about, feel free to post them in the forum titled, “Upcoming Medical Appointments: Q&A” as someone may have had the same question as you 🙂

      I hope you’re having a great day!
      Charlene

  • Shaw Jennings

    Member
    February 15, 2018 at 3:28 am

    Hi Charlene,

    In response to your question about my local support group – the same two people were there.  I made three along with the hospital staff that attended.  I found out the group started last October so it is still new and just getting started.  Surprisingly there are not more IPF attendees.   There has to be more of us in the immediate area as there are roughly 2m people in greater Las Vegas.

    As I stated in one of my other response, I have now completed my first day of Esbriet and so far all is well.

    Shaw

    • Charlene Marshall

      Member
      February 15, 2018 at 6:37 pm

      Hi Shaw,

      Thanks for sharing an update on how the support group went. By training, I am a family therapist and the idea of support groups always fascinates me because everyone has such a different concept of what would be helpful in a support group. Things can really vary in a support group, and some questions I like to know about  a support group before I consider joining are:

      • Is the group facilitated? If so, is it a peer facilitator (ie. another patient) or facilitated by a professional?
      • Is it an open group, meaning anyone of all ages can join or is it age-group specific (Ie. young adults, for folks 50+ etc) — this is mainly because discussion topics greatly differ for patients at different stages of their lives, although there are some similarities as well.
      • Frequency of the group, ie. is it a monthly or weekly commitment
      • What is the geographical catchment area of people attending the group? I like to know this because if it is a group for people within a similar proximity, then is opportunity to then establish social support with people beyond the context of the group.

      I am curious if the group is a mandatory requirement or is it optional for people to attend? I have heard of transplant programs in different hospitals that have a mandatory support groups before a patient can be considered eligible. If you would be willing to share, what types of conversations took place in the group (medication related? emotional concerns of patients? etc). Please don’t feel pressure to share if you aren’t comfortable, I respect the context of any support group wanting to remain private.

      Thanks again for sharing and I  hope your second day of Esbriet is going well for you!

      Charlene

    • janis-bunch

      Member
      March 10, 2018 at 5:59 pm

      Hi Aisha,
      I was diagnosed with Usual Interstitial Pneumonitis on January 23, 2018 and am taking Esbriet, now at the full dosage. I haven’t had any ill effects from it, but make sure to take it with food. My pulmonologist also has referred me to UWMC Interstitial Lung Disease Clinic for additional testing. He and a colleague discussed my case and think I may actually have Non-Specific Interstitial Pneumonitis. I am waiting for the referral to be approved.  I hope your appointment is helpful!

      • Charlene Marshall

        Member
        March 11, 2018 at 1:39 am

        Hi Janis,

        Thanks for your post and contributing to this thread about Esbriet. I’m so glad to hear that you haven’t had any side effects on this drug, I will pray that this continues for you! Do you feel like it has helped you at all since starting it? I know you were put on it in January so may not have a long time to compare it to, but just curious as to whether or not you’re noticing a difference. It sounds like you and Aishia might have lots to chat about after her appointment, including being at the same facility! I’ve heard amazing success stories come out of UWMC and I hope you both are within those stories too 🙂 … wish we all lived closer together!

        Keep in touch Janis and wish you nothing but the best with your upcoming appointment at UWMC. Let us know how it goes if you’d like…

        Cheers,
        Charlene

  • Shaw Jennings

    Member
    February 15, 2018 at 4:40 pm

    Hi Aishia,

    Thanks for your helpful tips.  For now I am eating more food than usual – half a meal, then the pill, then the 2nd half.  I am also drinking water.  I think that once I get to 9 pills a day, assuming I can tolerate 6 then 9 a day, I will see if I can cut back on food.  Your banana and coffee breakfast sounds promising.

    Thanks again,

    Shaw

     

    • Charlene Marshall

      Member
      February 15, 2018 at 6:40 pm

      Hi Shaw and Aishia,

      I am just curious about the increase in anti-fibrotic medications, and whether the process is the same for Esbriet and Ofev. Is there a standard time frame for patients to take a certain amount of pills (ie. 2 pills, 3x per day, to build their tolerance) before increasing it, or does it vary from patient to patient?

       

      Thanks in advance for sharing this info!
      Charlene

  • aishia-moaishia

    Member
    February 15, 2018 at 8:07 pm

    Charlene,

    The way I have been prescribed Esbriet is as follows:

    Days 1-7 take 1 pill 3x a day with meals

    Days 8-15 take 2 pills 3x day with meals

    days 16 forward take 3 pills 3x day with meals

    If you miss or are off for 14 days you have to start over.

    I do not know anything about Ofev….

     

  • Charlene Marshall

    Member
    February 16, 2018 at 4:44 am

    Thank you for sharing Aishia, I am sure members taking Esbriet (especially those who are new to taking it) will really benefit from your post. It does sound similar to the process of building a tolerance for Ofev, although I am sure each medication regimen is tailored to the individual patient too.

    Thanks again for sharing.

    I am hoping Shaw is tolerating the medication okay, I’ve been thinking of him!

    Charlene

  • alfred-arnold

    Member
    March 6, 2018 at 5:46 pm

    Hi Charlene,

    Thanks for providing information and enabling information from IPF individuals to be shared.

    I was diagnosed with IPF in December 2017 after CT/PET scan was performed after 6 months of chemo treatment for recurrent prostate cancer. While the scans showed that the cancer was under control, it showed several other problems: CAD, nodules on the thyroid and fibrosis of the lung. IPF was confirmed by my Pulmonolgist with a follow-up high resolution CAT scan.

    I will be starting Esbriet when it arrives. My initial concern is digestive tolerance and tolerance to sunlight. I have a good friend who was diagnosed with IPF a few years ago who was put on Esbriet about 6 months ago. He has not experienced any side effects.

    One additional note – after a comprehensive evaluation by my cardiologist, he recommended that I read “The End of Heart Disease,” by Dr. Joel Fuhrman. After reading this book I have adopted his Nutritarian diet which calls for obtaining most of your nutrients from plants rather than animal sources. I wonder if anyone with IPF is following a primarily vegetarian/vegan diet. The diet reduces inflammation associated with coronary artery disease (CAD). I wonder if it has benefits for IPF patients.

  • Charlene Marshall

    Member
    March 7, 2018 at 3:02 pm

    Hi Alfred,

    Thanks so much for joining the PF forums and contributing to this conversation thread… we’re glad to have you!

    I am so sorry to hear of your diagnosis this past December. I always find it harder to hear stories of an IPF diagnosis as secondary to cancer treatment, because PF seems so unfair as it is but to develop as a result of the necessary treatment for another disease is just cruel. Another friend of mine has PF secondary to chemotherapy too. Are you located in the US Alfred? Just curious 🙂

    I hope your experience will be similar to your friends’ whereby you don’t have any unpleasant side effects. Based on this forum thread and hearing of others’ experiences, it sounds like the best thing to do is to ensure it is taken with a hearty meal. One person mentioned taking half their dose, eating half their meal, then taking the other half of their Esbriet and finishing their meal with lots of water. I’m not sure of the sunlight concern, but this is something I have to be mindful on OFEV, so it makes sense that it would apply. Can anyone else comment on how sunlight exposure is impacted by Esbriet for Alfred? Let us know how you are managing on it Alfred, when you start. Shaw has had a positive experience with Esbriet so far I believe too….

    I am really interested in picking up a copy of this book Alfred, as I know how important heart health is especially with a lung disease. Has your Doctor ever mentioned testing you for Pulmonary Hypertension?  I get checked for this annually due to having IPF. Reducing inflammation is so important for me as my cRP levels were very high on my last autoimmune blood work up, meaning the inflammation is high in my body. I primarily eat only chicken and turkey for meats, very little red meat and a lot of fruit and veggies (I get most of my fruit intake through fresh juicing actually…) but think I’ll take a look at this book, thank you for sharing!

    Chat soon and feel free to connect any time.

    Warmly,
    Charlene

  • alfred-arnold

    Member
    March 7, 2018 at 4:54 pm

    Charlene, thanks for your prompt response to my post. It is so important to ones psychological well being to know that others with a similar affliction care.

    I live in North Jersey. Before my diagnosis I had never heard of IPF. Being that it is so rare, I’m astonished that my friend, who lives in the same town, is afflicted by the same condition. Although the “I” in IPF stands for idiopathic, his care is being managed by the fund set up for first responders of the September 2001 incident at the World Trade Center. In his case the condition was probably due – at least in part – to breathing in toxins while he was working in that area.

    On my next visit to the Pulmonolgist I’ll ask about pulmonary hypertension.  Let me say that I am feeling well at this point. I walk for about 45 minutes at least 5 days a week, with no shortness of breath. With incorporation of a healthier diet, recommended medications, exercise and emotional support from family and friends I plan to have a good quality of life throughout my retirement.

    • Charlene Marshall

      Member
      March 8, 2018 at 4:44 am

      Hi Alfred,

      Thanks so much for your reply! I agree, it certainly is comforting to know that others’ who truly understand what it is like to be living with IPF are available and care. I’ve found a lot of comfort and support on these new forums already, and I hope you find this as well.

      With regards to your friend, it is so interesting (although I wish for him he wasn’t experiencing IPF) you mention that his disease could have been caused in part by responding to the attack on the World Trade Center. I say that because this past December, I flew to NYC with two friends of mine, oxygen in tow, to celebrate my 30th birthday and while were there we did the 9/11 museum. As I was watching the videos and seeing all the dust on the artifacts that were being preserved, I silently thought to myself, “I wonder how many first responders developed PF from this, or similar lung diseases”. I didn’t share my thoughts with my two friends, and I am sad to hear of your friend developing this disease after responding so heroically on that day. He will be in my thoughts and prayers!

      It is so refreshing to hear how well you are doing as well, thank you for sharing that and I hope you are able to maintain this level of activity – 45 minutes of walking 5x per week is amazing! Have you done a 6 minute walk test? Your oxygen levels must stay pretty steady during that in order to be able to exercise as much as you are, which is great news! I look forward to getting to know you more and hearing about all your retirement adventures 🙂

      Cheers,
      Charlene

  • alfred-arnold

    Member
    March 8, 2018 at 1:43 pm

    Charlene,

    My friend was not actually a first responder. He was working in the ground zero area for the gas/electric company during the massive clean-up period. I had another very good childhood friend (deceased) who was on his 2nd day on the job as a National Park Ranger, assigned to Battery Park. He saw the 2nd plane hit the World Trade tower. He assisted many people away from the area. Several years ago he passed away from esophageal cancer.

    I will never forget that day. My wife was having a colonoscopy. I was in the waiting area watching the events unfolding on TV. It was as if I was watching a devastation movie not actual events. From where I live I can see lower Manhattan. The buildings smoldered for 3 weeks. I also visited the area with my Australian cousins a few weeks before the museum opened.

    I did the 6 minute walk and a breathing test following my diagnosis. This provides a baseline for future evaluation. I also had a cardiac stress test which lasted about 6 minutes. I did well on both without shortness of breath. When asked if I experience shortness of breath, I really did not know how to respond. I remember last Spring when I was cutting my lawn that I became quite fatigued and had to stop several times before continuing. I guess this was the first sign that something was amiss, but I attributed it to getting old. I’ll be 70 on my next birthday. This was also before my recurrent prostate cancer was diagnosed. Subsequently I assumed that my fatigue was caused by the return of cancer. If I didn’t have the scans following chemo, I would not have suspected lung disease.

    I suppose that I am much more fortunate being diagnosed with IPF at this stage of life rather than those diagnosed in the prime of life.

    • Charlene Marshall

      Member
      March 11, 2018 at 1:33 am

      Hi Alfred,

      It’s nice to hear from you and thanks for your reply! I appreciate hearing the stories of your friends and their connection to the WTC… I think both of them are very heroic still, even the folks who were responsible for the cleanup of the attacks at ground zero. I remember visiting in February of 2002, of course just a few months after the attacks and being able to still see the smoke in the air from the towers’ collapse. I can’t imagine their experiences and the emotions of that day (even for you, actually, for all Americans…) and to know that they both ended up with serious illnesses is heartbreaking, even if it is unrelated to the attacks. I still think about that day often, even as a Canadian and the museum and tribute pools were very touching to see when I was in NYC this past December. The way they honoured every single person who died that day by telling their individual stories in the museum was very touching. I bet the lower Manhattan skyline has drastically changed for you, from having the two towers beam into the night before the attacks, to an empty space where they stood and now having the Freedom tower standing there?

      I am glad to hear you did well on all the physical testing for your IPF diagnosis, including the stress test. I had a really hard time with the stress test, both was short of breath I think because of my disease but I was also so anxious as they continued to increase the speed of the treadmill. I tried without oxygen at first and it was terrible, so I was put on oxygen (this was before I had it at home) and my sats dramatically improved. The stress test still makes me shutter a bit because it was such a hard test for me. If I may ask, did you notice one symptom before the other (ie. shortness of breath before fatigue, or other way around)? I didn’t notice the fatigue at first, just the shortness of breath but now I really feel plagued by fatigue and find it difficult to manage, especially when trying to keep up with my friends who are in their early 30s… I just can’t do it anymore, and I’m only 30!

      I hope your prostate cancer is in remission and I will continue to hope and pray for this for you!

      Take care,
      Charlene

  • aishia-moaishia

    Member
    March 10, 2018 at 8:31 pm

    Hi Janis,

    So nice to meet you. I had my appointment up at UWMC last Friday and it was pretty amazing. Dr. says I do not have IPF, but rather NSIP auto immune related. I am still tasking Esbriet with no side effects (thank goodness) and am now taking Mycophenelate and Prednisone. Thank you for joining this forum and please keep us informed on your appointment and how you are doing. <3

    Smiles~

    Aishia

    • Charlene Marshall

      Member
      March 11, 2018 at 1:42 am

      Aishia, I find myself jealous that there is potential you could overlap and cross paths in person with Janis at UWMC! Do you know if they offer any type of young adult support group through there for people with ILDs? I know they treat quite a few as I am part of some social media sites of young adults receiving their lung transplants there so I would imagine they have enough patients to consider something like this? A support group for young adults would be so helpful, as I just don’t relate to a lot of the issues that most patients with IPF have, since I/(we) are so much younger than most. Would be awesome to find a group through UWMC if they had one. Do you think this would be helpful for you? I know not everyone would find this helpful like I would…

      Curious to hear your thoughts!
      Charlene

  • janis-bunch

    Member
    March 11, 2018 at 3:58 am

    Hi Aishia,
    It’s so nice to meet you. I wonder if my diagnosis will also be changed to NSIP? You didn’t have to undergo a lung biopsy? My pulmonologist told me that I will probably have to have one.
    Just knowing that you have been to UWMC and feel like you received great care makes me feel more confident.
    Do you live in the Seattle area? I live south of Olympia.
    Thanks for the warm welcome! 🙂
    Janis

  • janis-bunch

    Member
    March 11, 2018 at 4:08 am

    Hi Charlene,
    Right now it’s hard for me to gauge how much Esbriet might be helping, Unfortunately, I am suffering from a cold. 🙁  Thinking (hopefully) I may have turned a corner and have begun improving. 🙂
    I am hopeful that  Aishia and I may become great supports for one another, we do seem to have a lot in common. I wish we all lived close together, too.
    I am new at posting in these forums, so if I am not following any guidelines or norms, please let me know
    Thanks for your response!
    Janis

    • Charlene Marshall

      Member
      March 11, 2018 at 2:34 pm

      Hi Janis,

      Thank you so much for your reply, although I am so sorry to hear you have a cold. I am just getting over a respiratory infection as well, which are pain in the necks for people without a lung condition, so with one they are terrible. I hope you are on the mend soon, and as you say, hope that you have begun to improve. 🙂

      Yes, wouldn’t that be great, to have someone in close proximity where you can be of support to one another. I’ve only “met” Aishia through the forums, and she seems lovely! It’s neat that your treatment centres overlap through UWMC too, lots to chat about even with that. Let’s all keep in touch.

      No worries re: the guidelines for the forums, there aren’t many to follow actually. I’m just moderating that everyone is contributing credible, helpful information and are being of support to one another. If you can think of any topics you’d like me to write about and/or research to post here, please let me know.

      Thanks,
      Charlene

    • aishia-moaishia

      Member
      March 12, 2018 at 3:45 am

      Janis,

      Hello again. Sorry I have been MIA all weekend the weather was too beautiful here in Oregon. I am so sorry you have a cold but I hope you are on the mend now. No Dr. Raghu @ UWMC did not want to do a lung biopsy now because he felt it wasn’t worth the risk. He said based off my history and signs and symptoms he was confident I do not have IPF but rather NSIP.  May I ask about you? Are you married, children, age, career, hobbies, loves, hates?? Please do not answer anything you aren’t comfortable with I promise not to be offended. Honestly I just want to know people not just their disease. I mean we are so much more that our lungs, right?

      Chat soon

      Smiles~

      Aishia

      • Charlene Marshall

        Member
        March 12, 2018 at 6:33 pm

        Hi Aishia,

        I know your questions were directed to Janis and getting to know her a bit better, but I had to comment as I love what you said about us being more than our lungs! I couldn’t agree more! Sometimes I think people forget, especially hospital personnel sometimes, that we are so much more than our lung disease. I actually wrote a column about this once, as I feared my identity as an IPF patient was taking over my identity as a human and I hated that. Here is the column: https://pulmonaryfibrosisnews.com/2017/12/18/pf-is-not-only-me-i-have-many-cherished-identities/ 

        Thanks again for reiterating this… we are so much more than our lungs 🙂

        Have a great day!
        Charlene

  • janis-bunch

    Member
    March 12, 2018 at 5:25 am

    Hi Aishia
    Thanks, I am feeling a lot better tonight. It was the first time being sick since being diagnosed and I wasn’t sure what to expect. Luckily, not too bad, just a regular cold. 🙂
    I am 56 and divorced, and I have one grown son, Michael, who is 31.  He has a wonderful girlfriend, Amber, who has a little 9-year-old girl, Aubree. Love them to bits. I’ve been disabled for a number of years due to other health problems aside from UIP? NSIP?, which I was diagnosed with in January after having pneumonia for 5 weeks. My dad and brother both passed away from asbestosis, so there is apparently a genetic factor in my illness. I worked as an Executive Assistant for a low-income housing agency most recently. I like to garden and crochet and love the beach. I have four Pekingese, they are my babies.  Three of the four are rescues.
    The weather was beautiful today here, too. I am happy you were able to get out and enjoy it. Tomorrow our temperature is forecast to be 70+ :O
    Tell me more about yourself. I am so happy to get to know you, and yes, we are so much more than just our diagnoses.
    Janis xoxo

    • Charlene Marshall

      Member
      March 12, 2018 at 6:38 pm

      Hi Janis,

      Thank you for sharing more about yourself, it is so great getting to know folks through this forum! What a beautiful name Aubree, she and her Mom seem lucky to have you and Michael in their lives. 🙂

      Was anyone ever able to link the asbestosis that your Dad and brother experienced to anything environmental, or they suspect it is genetic? I’m just curious about this as everyone’s experience with lung diseases seem so drastically different.

      I also love the beach, and am jealous of the weather that you’re both experiencing right now. As I look out my window, I am watching constant, thick snowflakes fall softly to the ground. It is pretty, although I don’t appreciate the cold that comes with it.

      Hope you’r both having a great day!
      Charlene.

      • janis-bunch

        Member
        March 12, 2018 at 11:14 pm

        Hi Charlene,
        My dad worked in the shipyards during WWII and was exposed to a lot of asbestos. My brother, we are not so sure. He worked in wood mills and a pulp mill, so he was exposed to wood dust and chlorine. Also, not sure about mine, I worked near blueprint machines, which use ammonia, for 7 or so years. I’ve seen some conflicting information about statins, which I have taken for 10+ years. My primary care doctor really sat up and took notice when I told him about family history, he wasn’t seriously considering pulmonary fibrosis. He decided to refer me to my pulmonologist and further testing confirmed my diagnosis.
        I love to watch it snow, but not keen on driving in it! We don’t get much here and everyone kind of freaks out about driving! lol I hope you are all tucked in, nice and cozy! <3
        Janis xoxo

      • Charlene Marshall

        Member
        March 13, 2018 at 10:09 pm

        Hi Janis,

        Thank you so much for sharing your experience with getting diagnosed, as well as the career / jobs that your Dad and brother had. I really wouldn’t have known or thought about blueprint machines and giving off ammonia but something to be wary of for others reading this thread. I often think about the many different jobs/careers that could unknowingly contribute to a lung disease due to toxins, chemicals, particles of dust, etc., especially in light of the article that was just released about a surge in dentists and dental assistants coming down with PF. I was sharing earlier that not too long ago I drove past a construction zone and as I was parked at a red light I was watching some of the workers dig some form of operating equipment into concrete and they weren’t wearing masks as the dust seemed to come back in their face. While they may have made the choice not to wear the proper protective equipment, I found myself feeling sad for them and thinking “if you only knew how hard it is living with a lung disease”. I actually wrote a column about this, as it got me thinking about other potential careers/jobs that could unknowingly expose people to factors dangerous to their lung health.

        With regards to the statins, if I may ask: were these prescribed to you over the 10+ year for other suspected health issues Janis? I know many people are on them, so I am just curious about learning more but please only answer what you’re comfortable with. Eventually with your diagnosis Janis, would you be eligible for a lung transplant?

        Yes, the snow certainly can be beautiful to watch, I do agree! The last couple of days it has been really pretty snow – thick, white flakes that aren’t sticking to the ground so not making a mess, just making it a bit pesky to drive in. I do admit though that I am now ready for spring! 🙂

        I hope you’ve had a great day!
        Charlene

      • janis-bunch

        Member
        March 14, 2018 at 6:55 pm

        Hi Charlotte,
        I have been prescribed statins because of two heart attacks. My family history is terrible, with my three brothers also affected. One brother had a massive heart attack and died at 36. My two other brothers had bypass surgeries. One passed away from the heart disease and the other from asbestosis. I have had several angioplasties and have eight stents.  I also have insulin dependent Type II diabetes, among other illnesses. Oh, and I do have two auto-immune diseases – Celiac disease and Hashimoto’s thyroiditis. I am not compliant with my celiac diet but plan on asking my doctor if that would impact my UIP. I think it might because it probably affects inflammation. I doubt that considering my health history,  I would ever be considered for a lung transplant.
        I was also diagnosed with Vitamin D deficiency many years ago, and took the mega dose for 12 weeks, I believe. I take 5000 IU of Vitamin D per day.
        How fun that you, Aishia and I all enjoy pets so much! You have a sweetheart of a breed, too! <3
        Hope you have a wonderful Wednesday!
        Janis

         

      • Charlene Marshall

        Member
        March 15, 2018 at 2:12 am

        Hi Janis,

        Thank you so much for sharing, although I am so sorry to hear of such a health history with your family, particularly your siblings. That must have been so hard, losing your brothers… you are such a strong and brave woman! I am thankful for your survival of the heart attacks you had as well, how scary those must have been for you. Were those recent, if I may ask?

        I would be curious too about how celiac might impact UIP, especially if it causes inflammation, which is often something we struggle with in our lungs. I know last year I really struggled with this and had to take a combination of a chemo-like drug (Cyclophosphamide) and prednisone together in high-doses to bring down the inflammation. Although it did work, the protocol was really hard for me to get through. Will you let us know what your Doctor says?

        So interesting that you also have a vitamin D deficiency. I did some reading on that today, from the article that was shared here in the threads above and I am finding this link so interesting. I’m definitely going to bring it up to my physician when I see her next. I have been prescribed the mega dose of 50K IU for 12 weeks as well, so far I don’t think I’m noticing too much of a difference but I am trying to be mindful of any changes. Unfortunately I was in a car accident in December and I’m having a hard time differentiating what might be whip lash vs. what is pain from coughing/IPF-related discomfort. Did you just start the supplement on your own after the mega dose timeframe was done? I think I am going to do this as well…

        I sure do, my puppy is such a suck and gets a way with everything but I love her so I am fine with that. I’m so grateful for her! I wrote an article actually about how she is my best source of therapy. You can find it here if you wanted to read it: https://pulmonaryfibrosisnews.com/2017/12/14/best-ipf-therapy-is-my-dog/

        No pressure though of course! I hope you had a wonderful day today, and thanks so much for sharing 🙂

        Charlene

  • aishia-moaishia

    Member
    March 12, 2018 at 11:22 pm

    Janis and Charlene,

    C- thank you so much for posting the link to that article! I am really strong in my conviction to not be reduced to my disease. This is just another page in my story and does not make up my whole book. I will do everything to help others know that they are more than their lungs/diagnosis.

    J- I love dogs! I have 2, a 14 year old Golden Retriever/Blue Heeler mix and an 8 year old Boxer. We also have 2 cats.  I am married (almost 21 years) to the best man and my favorite person ever! He is my rock and my heart! We have 2 beautiful children ages 21, and 20. We also have an unofficially adopted son as well, he is 21. I work FT for a hospital here in the business office and am fortunate that I get to work from home.  I am also a FT college student working on my Bachelors of Science degree in Public Health/Healthcare Management and Policy. I have hopes to finish my BS and continue onto a accelerated BS to RN program and flow into a Masters of Midwifery program to become a Certified Nurse Midwife. I love yoga, walking in sunshine, taking trips with my family, art, interior design, some gardening, reading, anything creative really. I love to sing but am not so great at it but I still do for the joy of it. My daughter has a lovely voice and we often joke that I sing with a lot of passion but little talent, ha ha ha.   It sounds like you have a very lovely family of 2 legged and 4 legged loves.  I don’t know much about Pekinese dogs but they are quite cute!

     

    • Charlene Marshall

      Member
      March 13, 2018 at 10:16 pm

      Hi Aishia and Janis,

      One more thing I’ve noticed we have in common – the love of our four-legged friends! I have a 2.5 year old golden retriever, who I kind of ended up with by ‘accident’ as an 8-week old puppy and I love her more than I ever thought possible to love an animal. I also have a cat, who is a bit more of a pain in the butt but I love her too 🙂

      Thanks for the lovely comment on my article Aishia, and I’m so glad you could relate to it’s premise, about us being so much more than our lung disease. I try to remind people of this often as well, as sometimes it can suddenly be so much about our lungs and people forget to ask about other things important to us as well.

      I hope you’re having a great day!
      Charlene

    • janis-bunch

      Member
      March 14, 2018 at 6:41 pm

      Hi Aishia,
      It sounds like you have a wonderful family, both furry and not. 😉  Your dogs sound wonderful, they are such nice breeds. Mine are rescues, except one I got as a puppy. None are show quality in any sense of the word but I think they are beautiful and they keep me going!
      I went to college for training to be a medical transcriptionist but ended up working in low-income housing. I do have a great interest in healthcare in general. It is so fantastic that you can work from home!
      You are a very busy lady. But what a wonderful goal to work toward, a certified midwife. I can’t imagine a more fulfilling career. You also have a lot of interesting hobbies.
      Thanks for sharing your personal information, it is great to get to know you better.
      Janis 🙂

       

  • Deleted User

    Deleted User
    March 13, 2018 at 7:32 pm

    I have been taking Esbriet for three years now, and have  changed to the single 801 mg tablet instead of the three capsules at every meal.  It is much more convenient. I had learned early on that Esbriet in either form needs to be taken with food, not ahead of time, but just before the first bite, to eliminate nausea and even dizziness. I have learned that with the tablet, which must dissolve faster than the caps, I have to wait longer, until after I have eaten a portion of the meal, to take it. With that simple precaution, I experience no problems.

    The only other side affect that I quickly noticed is the increased sun sensitivity. No longer concerned with developing a tan, SPF 50 prevents me from getting a rash.

    I hope these tidbits help someone.

     

    • Charlene Marshall

      Member
      March 14, 2018 at 12:36 am

      Hi Scott,

      Welcome to the PF forums and thanks for contributing to this thread! I also didn’t know about the 801 mg tablet, so I am confident that others will find this information, along with how you’ve learned to take your Esbriet very helpful. I am not on Esbriet, but OFEV instead and have also noticed sun sensitivity… basically just more susceptible to burns. Although with the proper protection, I still love to be out in the sun and I guess I need to increase that this summer as I started another forum topic about being critically vitamin D deficient. So much so that I needed a prescription for vitamin d 50,000 IU for 12 weeks to bring it up again!

      Thanks again for sharing, I know others will find your post very helpful!

      Cheers,
      Charlene

  • alfred-arnold

    Member
    March 13, 2018 at 9:25 pm

    Scott,

    I’m glad to hear that you are not experiencing side effects with Esbriet. I was unaware that a single 801 mg tablet could be taken instead of 3 capsules at every meal.

    I started taking Esbriet 2 days ago, one 267 mg tablet at each meal. The initial shipment contained 207 coated tablets. Week two I am to take 2 tablets, 3x/day. Week three – 3 tablets, 3x/day. The booklet I received indicates for week four to ask my doctor if transitioning to fewer pills per day is an option.

    When did you switch to a single dose 801 mg tablet?

    I was diagnosed in December 2017 with IPF at age 69. How old were you when you were diagnosed and how has your health fared over the 3 years?

    Right now I wouldn’t have known there was anything wrong with my lungs, except for a CT/PET scan that was done at the end of 6 months chemo for recurrent prostate cancer. As a result of the scan, I found that I have – in addition to IPF – coronary artery disease (CAD) and hyperactive thyroid disease. I don’t feel sick and have kept up with my 45 minute walks at least 5 day a week. I have modified my diet to include more vegetables, nuts, fruits and whole grains and less animal based foods.

    • Charlene Marshall

      Member
      March 14, 2018 at 12:40 am

      Hi Alfred,

      I hope you’re doing well.

       

      Just a quick reply to your questions for Scott: do you walk inside or outside for your 45 mins? Do you find one makes a difference in your breathing over the other, ie. weather conditions? I really enjoy walking, especially taking my dog for a walk in the summer time but I am noticing more often than not, I struggle with shortness of breath if walking outside. Likely the elements including air quality, temperature, pollens, etc. contribute to that but it is still manageable for me, despite using supplemental oxygen at times. When I walk inside on my treadmill though I don’t seem to notice the same struggle. Just curious whether anything impacts your walks or if there are things that make it better for you?

      Thanks,
      Charlene

    • Deleted User

      Deleted User
      March 14, 2018 at 5:45 pm

      Arnold,

      I read about the 801 mg tab several months ago in an PFF email news letter and my pulmonologist was fine with me switching and wrote a new script. I carry the medication in a pillbox for meals when I’m out and about. I carry enough for many meals and it is much easier to to take one than three, and they don’t roll off the table as the capsules did.

      I am now 68. My diagnosis was also a fluke as a result of an x-ray taken for a neck issue that caught the upper part of my lungs as well. Three years later, I am still functioning fairly normally with no need yet for oxygen. The Esbriet has slowed the progression of my IPF by about half as was hoped. My wife and I enjoy walking in our nearby county and state parks that have plenty of challenging hills. While still able to do it, I do have to take them a little slower and stop to catch my breath occasionally. I think that remaining active helps.

      Scott

      • Charlene Marshall

        Member
        March 15, 2018 at 2:01 am

        Thank you for sharing Scott!

        I agree with you, that remaining active helps… I certainly think it has for me as well. 🙂 Have you started or completed any pulmonary rehabilitation programs yet? Perhaps this hasn’t been recommended to you yet based on your disease being stable, I just thought I’d ask as it really helped me when I did it. Just curious of others’ experiences thats all.

        I hope you had a great day.
        Charlene.

  • tom-nicholas

    Member
    March 13, 2018 at 10:55 pm

    Shaw,
    You’ve come to the “right” place…you probably realize that fact now. this group will help you through just about any problem, give you advice, and give you support…we’re all I this together. I had no side effects with Esbriet until I went to the full dose…3 pills at each meal. I take my Esbriet half way through the meal…nothing magical about that…it’s just what I do. When I started 3 pills a day, in about a week I started having a side effect. nothing pretty about it….but the folks on this site have a good sense of humor, even for the most embarrassing issues. I experienced what I called “battery acid diarrhea”. Flame throwing out the posterior. I asked for help, and I did receive the perfect solution which actually worked. Every morning with breakfast Ihave some probiotic yogurt…Yoplait. It is almost like a desert to me. Within 2 weeks the flame was out and all was normal! The big thing here is, to ask for help and stick with the program as sometimes time will resolve everything! Good luck!

    tommagic1

    • Charlene Marshall

      Member
      March 14, 2018 at 1:27 am

      Hi Tom,

      Welcome to the PF forums and thanks so much for contributing to this thread. We’re glad to have you, and I couldn’t agree more …. we are all in this together!

      We do have a good sense of humour, and I am glad you do too Tom as there is a potential for all of us to experience unpleasant side effects like you mentioned. I’m glad it was an ‘easy’ fix for you though, meaning you just had to add a dessert-like option into your diet (the yogurt). Regarding the Esbriet, have you felt like it is helping you Tom, in terms of feeling better generally (ie. less short of breath) or based on your lung function reports? Have you been on it for awhile?

      Wishing you the best and looking forward to getting to know you a bit more!
      Charlene

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