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    • #23107

      A popular discussion topic among the Pulmonary Fibrosis News Forums is how to manage the side effects associated with either one of the two FDA-approved anti-fibrotic therapies for IPF. It appears from the article cited within this flash briefing, that concerns with side effect management can be prohibitive to patients and physicians possibly prescribing the medication. This is in addition to other factors such as costs and physician unfamiliarity with the drug(s) may also be to blame for approximately 40% of IPF patients not receiving the anti-fibrotic medications.

      After your diagnosis of IPF, how long did it take for you to be prescribed Ofev or Esbriet? Did your doctor readily bring up the drug to you or did you have to inquire about it from your own research?

    • #23120
      Jay Turbes-s
      Participant

      Six months or more after FDA approval before Esbriet was prescribed by Kaiser/CO.

    • #23151

      Isn’t that sad Jay? I know some patients still struggle with getting this drug prescribed (per the flash briefing) despite it being FDA approved for years now. The number of upto 40% was staggering though. Hopefully this changes!
      Thanks for writing.
      Charlene.

    • #23154
      ajd
      Participant

      I heard the drug was marginally effective.  i better do my research again.

      Tony

    • #23162

      Hi Anthony,

      Let us know if we can help by sharing patient experiences! I know the GI side effects from the anti-fibrotic medications can be rough but many of us swear the drug helps to stabilize the disease progression. Others don’t think it does, and say the side effects aren’t worth it if their quality of life is compromised. It really seems to be different for each person. Let us know if you have any questions we can help with!
      Charlene.

    • #23171
      Lee Ann Robertson
      Participant

      My doctor prescribed OFEV the day of my diagnosis. It took a few weeks for me to actually get started on it.

    • #23174
      Marsha
      Participant

      I was diagnosed with IPF in 2015 and the only comment my pulmonologist made when I asked about Esbriet and Ofev was, “Oh no, they have terrible side effects.  You don’t want to get involved with them.”  Now in 2020, I see a new Pulmonologist, and he has not mentioned these drugs either…  Is it possible that since I have severe scarring, I am no longer a candidate to reap any benefit from taking them?  One thing is for sure:  On my next appointment with my Pulmonologist, I am going to bring up why I have not been put on either drug over the FIVE YEARS since my diagnosis and press the subject if need be to get answers.  I expect to be informed about whether these drugs might help me and ANY CLINICALLY PROVEN REASONS why at my current stage of IPF they will not help slow down progression of my disease.

      I feel robbed of the opportunity to use these drugs so far!  (And by the way, I no longer will allow any Doctor to make my decisions for me before he fully discusses what I need to know and answer all my questions so that I CAN MAKE MEDICAL DECISIONS FOR MYSELF!

      Marsha Harris in Pittsburgh, PA

    • #23176
      JillT
      Participant

      I still can’t find any information that indicates the drugs actually do anything to extend life span. They also seem to do nothing to change people’s quality of life. I’ve never been convinced of the need for me to take them, especially if taking additional medications to control the awful side effects would also be likely. I’ve suffered with gastrointestinal symptoms for many years without resolution, so adding something else to the mix felt too daunting, especially without tangible quality of life gains.

      My experience has been feeling like I’ve been hounded to try and force me into taking one or the other of them since they were approved for use. It’s been a frustrating experience on both sides, to the point where I discharged myself from the government hospital service I was attending in favour of a private pulmonologist who would actually listen to my wishes as the patient instead of covering the same ground at every visit about why I wouldn’t take them. So, I guess it must vary between countries and probably even doctors. In general, I’ve found you really need to be your own reseearcher and advocate when it comes to all things health. So much medicine these days seems to be of the “tick box” style.

    • #23179

      Hi Lee Ann,

      I am glad to hear your doctor was proactive in prescribing you Ofev, that is a step in the right direction! How have you tolerated it so far? I hope you’ve managed with it okay, I know a lot of people (myself included) have a tough time with it at first.

      Charlene.

    • #23192

      @marshaharris

      Hello my friend!

      So nice to hear from you, thanks for writing to us about this topic. That said, I’m really sorry to hear of your experience with that first Pulmonologist when you asked about Ofev and Esbriet…. my jaw dropped! I hope physicians read this article, and start focusing more on prescribing these anti-fibrotics because not everyone has adverse reactions or terrible side effects. Even if you do, there are ways to work around it. Arg, so sorry Marsha. Proud of you for demanding answers at your next appointment, we are our best advocates. Do you mind circling back and letting me know how that goes? I really want to start understanding this phenomenon better — the reasons for physicians not prescribing the anti-fibrotics. Hopefully your next experience regarding these conversations is positive. Thanks again for writing.

      Sincerely,
      Charlene.

    • #23197
      Marsha
      Participant

      @charlene-marshall

      Good morning, Charlene!  Mixed responses to this issue, for sure!  Next Friday my goal is to get some answers about these two meds from my Pulmonologist, someone I respect and trust.  I am happy to get back to you with what I learn!

      I’ve been scarce on this site and miss the “closeness” of my prior involvement with you and my IPF brothers and sisters.  Time to read more, share more and feel the love!

      I hope you’re on the upside of the health challenges you were dealt late last year.  My admiration of your courage and perseverance endures!  And as always, I send you hugs and blessings, my dear.

      Marsha

       

       

    • #23198

      Thanks so much for sharing your thoughts and experiences with this Jill. Sounds like there are frustrations for patients on both ends of this – some docs pushing for it when patients are uncertain, and some physicians not prescribing when patients are wanting the anti-fibrotics. So tough! I appreciate you taking the time to write us about your experience.
      Charlene.

    • #23287

      Hi Marsha,

      So nice to hear from you as always! Sorry for my delay in responding – I just returned home from a trip to California, it was wonderful to feel the warmth of the sun again. Not too worry about being away from the forums for awhile, you’re never far from my mind and I know you’ll check in when you can. It is always amazing to hear from you though.

      Goodluck at your appointments this Friday with the Pulmonologist – I hope you get some answers. I’ll be thinking of you! Much love.
      Charlene.

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