• Hi Charlene,
    I just read your posts on your trip to Hawaii and thankfulness. I can thankfully report that my last breathing test in August showed no appreciable decline in lung function since my original diagnosis of IPF in November 2017.
    I was thinking of you after reading a book review of Albert Camus’ “The Plague” which I started reading this…[Read more]

  • Kim was a compassionate warrior and a source of comfort to all those who follow this forum. We mourn her passing but celebrate a life that touched so many. I didn’t get to know Kim, but knowing how much she meant to you Charlene, I would just say be strong and continue the fight against this disease. Kim would have it no other way.

  • Hi Charlene,

    Thanks for your comments on my immunotherapy. I’m going to have another go at it in January. I’m sure that by placing the return needle in the top of my hand will not be painful and will work well.

    I’m very interested in Mike’s IPF experience. It seems similar to mine. I don’t have the device that allows me to check my oxygen sa…[Read more]

  • Hi Michael,

    The topic about the progressive nature of IPF is of much interest to me. I was diagnosed with IPF following chemo therapy for metastatic prostate cancer in December 2017. A CT/PET scan was of concern to my Oncologist who recommended I see a Pulmonolgist. The Pulmonolgist ordered a high resolution CT scan from which my diagnosis was…[Read more]

  • Hi Charlene,

    Mike and I have been friends for 25+ years. We live in the same town in North Jersey. My IPF seems not to have progressed any further than when it was first diagnosed in December 2017. If you recall, I had a very bad allergic reaction to Esbriet and have since stopped. My doctor wanted to put me on Ofev, but I asked that my pulmonary…[Read more]

  • Hi Mike,

    Of course I know your story 1st hand, being a long-time friend and person who also was diagnosed with IPF. Over the past year I painfully witnessed your decline and was so glad to hear that you made the decision to seek a transplant. I was absolutely stunned when your wife (Pat) contacted me with the news that you were rushed to the…[Read more]

  • Charlene,
    Just to be clear I am not taking any medication for IPF presently. We are just watching to see if it progresses. Still not experiencing any IPF symptoms!

  • Alfred Arnold posted a new activity comment 1 year, 2 months ago

    Hi Charlene,

    Thanks for your response on the lung transplant. I am waiting for my friend’s wife to let me know when I can make a visit. He is apparently doing well following the surgery, but I’m not sure when he will be going home.
    I’m happy to report that the ill effects from Esbriet are now behind me. I asked my Pulmonolgist to repeat the breat…[Read more]

    • Hi Al,

      That is wonderful news about your friend. I’m so glad it went well, and that his recovery seems to be positive as well! I’m sure he would love to have you visit. I was talking to a friend just last week about his lung transplant (from Cystic Fibrosis) and he said he was out of hospital in 9 days…can you believe that? Pretty amazing!

      I’m…[Read more]

  • What can an IPF patient expect from a double lung transplant?
    A good friend of mine who is on oxygen 24/7 was entered into a lung transplant program a few weeks ago at Montefiore Hospital in NY. Earlier this week he was rushed to the hospital and received a double lung transplant. Mike (69 yr) who has been suffering with this disease for several…[Read more]

    • Hi Al,

      Great to hear from you! How are things going?

      I don’t have much to contribute to this question unfortunately, in terms of the lung transplant programs and what to expect. I know a lot of patients who have had successful lung transplants though! I’m happy for your friend and hope his recovery continues to go well. Have you checked out the…[Read more]

      • Hi Charlene,

        Thanks for your response on the lung transplant. I am waiting for my friend’s wife to let me know when I can make a visit. He is apparently doing well following the surgery, but I’m not sure when he will be going home.
        I’m happy to report that the ill effects from Esbriet are now behind me. I asked my Pulmonolgist to repeat the breat…[Read more]

        • Hi Al,

          That is wonderful news about your friend. I’m so glad it went well, and that his recovery seems to be positive as well! I’m sure he would love to have you visit. I was talking to a friend just last week about his lung transplant (from Cystic Fibrosis) and he said he was out of hospital in 9 days…can you believe that? Pretty amazing!

          I’m…[Read more]

  • Hi Charlene,

    Good to hear from you. I hope you have recovered from your recent setback.

    I am still battling with the itching and scabs from the Esbriet adverse reaction – very annoying and difficult to sleep. I am seeing improvement – definitely on th mend. Stopped taking Esbriet on 5/31. Will not make a decision on OFEV until my next visit in…[Read more]

  • After being diagnosed with IPF it made me think of my mortality.

    I told all members of my immediate family that I would like “The End of the End,” by my favorite musical artist – Paul McCartney played at my funeral. The lyrics are uplifting to me and I would hope comforting to those I leave behind:

    At the end of the end
    It’s the start of a jou…[Read more]

  • Hi Paula/Charlene,

    Sad to say I restarted Esbriet 267 mg tablets on May 17 and had to stop on May 31. I started as follows:

    Thursday 5/17/18, 1 tab/2x, Fri – 1 tab/3x, Sat – 1 tab/3x, Sun – 2 tab/3x, Mon – 2 tab/3x, Tue – 3 tab/3x, Wed – 3 tab/3x. Thereafter 3 tab/3x until May 31.

    Rash (hives) started again with itching, primarily in areas…[Read more]

  • Sheila,

    I am at the very early stage of IPF (diagnosed 12/2017) but have experienced acid reflux that has interrupted my sleep. Tums has worked but more effective has been Prilosec taken in the morning.

    When I first met with my Esbriet Support Team Clinical Coordinator he mentioned that he takes a Prilosec once each morning. What I have found…[Read more]

  • Paula,

    My doctor is also putting me back on Esbriet with the small white tablets, stepping up the dose as you described.

    My rash has completely cleared, but itching is still with me. My primary care physician put me on another course of Prednisone which ends on May 14.

    One other thing my wife found that may be causing the allergic response is…[Read more]

  • Paula,

    Definitely allergic reaction. Most probable cause – An excipient of the 801 mg Esbriet tablet (not the active ingredient). Will never know at 100% assurance.

    I live in North Jersey about 30 minutes west of midtown NYC. You?

    Al

  • Paula/Charlene,

    Back from my Pulmonolgist visit. Nothing unusual to note. Liver function tests all in normal range. Discussed going back on the 267 mg small tablets. Will start again with 3 tabs/day for 2-3 days, then increase to 6 tabs/day for a few days and finally back to 9 tabs/day. Will not go back to 801 mg tablets.

    Blood pressure slightly…[Read more]

  • Paula,

    I was not aware that Esbriet was going off patent soon, but a bit surprised that Genentech bumped up the cost to the patient since it is an orphan drug and can’t imagine a generic manufacturer going after the relatively small revenue it could capture.

    The last 4 years of my career I worked for a pharmaceutical contract manufacturer. I…[Read more]

  • Paula,

    I had an allergic response at about the 3rd day in with the 801 mg brown Esbriet tablet. I’ve been off the drug for about 2 weeks and have an appointment on Tuesday, May 2 with my Pulmonolgist.

    Hives at first appeared slowly, spreading with each day until they covered every part of my body except my face. The bumps subsided after a few d…[Read more]

  • Have not felt this good in more than a year. I’m 2 days from completing a 2-week regime of descending Prednisone for the hives condition that started about 3 weeks ago.

    The only difference to the medications/supplements that I’m taking is the increased amount of vitamin D3. Together with a bone health supplement, a mult-vitamin and most rec…[Read more]

  • Alfred Arnold posted a new activity comment 1 year, 7 months ago

    This is the rash, likely an allergic response. I had lunch with a friend of mine on Friday who also has IPF, diagnosed about 6 years ago. He was put on Ofev and after some period developed a rash on his legs. The photo he showed me was far less extensive than the reaction I got. He was taken off Ofev and put on Esbriet about 9 months ago and…[Read more]

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