• Esbriet Patient Survey

    Posted by Charlene Marshall on February 12, 2020 at 9:45 am

    Dear Forum Members,

    Pulmonary Fibrosis News is dedicated to meeting the informational needs of the pulmonary fibrosis community. We are always striving to collect information to serve you better! Please take a few moments to complete our Esbriet Patient Survey (below) to help us better tailor the information we publish as it pertains to Pulmonary Fibrosis.

    Charlene Marshall replied 4 years ago 5 Members · 9 Replies
  • 9 Replies
  • dennis-rowe

    Member
    February 11, 2020 at 12:38 pm

    Charlene,

    I took Esbriet for about a year and a half, before my bi-lateral lung transplant.  My Pulmonologist recommended it over Ofev.  I had no extensive reactions while on Esbriet, except for occasional diarrhea.

    I am now 11 months post op, and still gaining strength.  It’s been a long recovery, which was extended because I didn’t work hard enough initially post op.  I thank God I had it done, and praise the donor family for their caring donation!

  • mike-mses

    Member
    February 11, 2020 at 3:20 pm

    Charlene — I was on Ofev for 5 months and my insurance refused to pay for it over Esbriet.  Upon switching over, my diarrhea got worse, the nausea increased, and I wasn’t sleeping.  After maybe 3 months, my insurance agreed to switch back to Ofev.  The symptoms got better, but did not go away.  My doctor suggested that I take a 2-week break from all meds and then start again with Ofev.  This seemed to work.  I have been back on Ofev since last July now and I’m tolerating it well as long as I eat the right things.  Also, taking the three pills a day is easier than taking twelve.

    Dennis — What was your age when you received your transplant?  I will be 71 in June and am planning on doing the 3-day evaluation in two weeks to see if I am a candidate.

  • ken-vetters

    Member
    February 12, 2020 at 10:41 am

    I have been on Esbriet since it was available to the public in 2014 or 2015. I am 82 years old and diagnosed with IPF officially in 2014.  Initially the dosage of 9 pills a day produced unacceptable nausea so I cut back to 6 pills a day for several months. When the 801 mg pills became available, I switched to them taking 2 pills a day. At the urging of my doctor and family I have progressed through 2 1/2 pills a day back to 3 per day with no problems. I apparently have developed a tolerance of the Esbriet. Something seems to be working since my condition has seen only a slight decline over the last year. I hope that I am not an isolated case and others may see the same results. Ken.

  • clum

    Member
    February 13, 2020 at 12:47 pm

    Hi All- I am 67. I was diagnosed mid 2018. I chose Esbriet over Ovfev after reading posts from others , I didn’t want the GI problems. I had a slight reaction to sun exposure in form of a rash but I protect myself and have no problem. I did have to cut back occasionally while taking the 9 pills a day. I gradually was able to take the full dose and now take 3 -801mg dosing a day. I do have to make sure I take them at least 4 hours apart. Taking with food doesn’t seem to be an issue,although I do make sure I have something in my stomach. I do get an occasional heartburn or reflux symptom, I take 40mg a day of omeprazole. I enjoy reading what others do. Thanks Charlene!

  • dennis-rowe

    Member
    February 13, 2020 at 5:57 pm

    @mikemoses

    Mike,

    You asked how old I was when I got my transplant.  I was 72 in March of 2019, when I received my surgery, and turned 73 in November of 2019.  I’m told some transplant centers are more cognizant/reluctant of your age than others?  UCSF did my transplant, and I’m happy to say they were/and still are wonderful!

    There was a post a short time ago titled “Am I too old for a transplant?”  I commented on that posting, “…consider the alternative, it’s not a good one!”

    Mike, my best to you, and work hard post op!

  • Charlene Marshall

    Member
    February 14, 2020 at 10:20 am

    Hi Ken,

    Thank you so much for sharing your experience with Esbriet, and I am so happy the drug has become tolerable for you, as I know it can have some wicked GI/nausea side effects. I’m also glad you believe it is working based on stability, I will keep my fingers crossed that this remains for you for a long time. I appreciate the time you took to share your experience with us. Please complete the survey as well if you wouldn’t mind, we’d love to hear from you on that platform too.

    Sincerely,
    Charlene.

     

  • Charlene Marshall

    Member
    February 14, 2020 at 10:25 am

     

    @mikemoses,

    Hi Mike,

    Thank you so much for writing to us and sharing your experience with Ebsriet and Ofev. It is so helpful to learn how others tolerate medications for this disease! I’ve heard a lot of physicians recommend a 1-2 week break from the drug, almost like a system “reset” and then starting it again slowly, glad this worked for you.

    Have you started your evaluation yet? This process is exhausting but I hope it goes well for you!
    Char.

     

  • Charlene Marshall

    Member
    February 14, 2020 at 10:27 am

    @dennisr13

    Hi Dennis,

    Thank you so much for sharing your experience with Esbriet and your lung transplant. I really needed to hear a positive post-transplant story today, thank you. I’m glad you tolerated the drug well, but even happier that you don’t need it anymore due to your transplant. May you have many, many more wonderful years with that precious gift!

    Kind regards,
    Charlene.

  • Charlene Marshall

    Member
    February 14, 2020 at 11:07 am

    Hi Colleen,

    So nice to hear from you, thanks so much for writing and sharing a bit of your experience with Esbriet with us! I’d never heard of patients getting the choice between Ofev or Esbriet – has anyone else had this/ is it common? Just the other day I was on a call with someone who asked me this same question, about how doctors choose one drug over the other and I couldn’t answer it. I’m glad you had the choice here Colleen and that you’re managing Esbriet well. I also appreciate hearing from others as it is so helpful to my own experience – thank you for sharing!
    Charlene.

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