Pulmonary Fibrosis News Forums Forums Treatments and Science Ofev (Nintedanib) Ofev Users can Safely take Ofev on a Long Term Basis

  • David Merrell

    April 19, 2023 at 8:58 am

    I have enjoyed  reading all the emails in this thread and thought it was about time I said something . Who knows when my IPF started? It may have been going on for years but suddenly it just reared its ugly head? I haven’t played ice hockey for the last 12 years as I had a full knee replacement and it didn’t go as well as it should have. But I can remember how short of breath I would get after a shift on the ice. But more recent history was what turned up the diagnosis of IPF.  I returned from a European holiday in the fall of 2019 and I had a serious case of bacterial pneumonia. It was confirmed by an X-ray but in the follow up X-ray to ensure the pneumonia was out of my system they advised my family doctor that there was some scarring on my lungs. Just before Covid hit we spent a month in Palm Springs , golfing and hiking . My wife and I noticed how out of breath I was getting when climbing hills around PS. On my return to Vancouver my family doctor gave me a referral to a pulmonologist who eventually ordered  a CT scan and pulmonary lab tests. The CT scan confirmed the IPF and lab tests confirmed a serious drop in lung function. This would be the fall of 2020.
    it was not until late summer of 2022 that I was put on OFEV 150 which I could not tolerate. Severe diarrhea and a hideous increase in liver enzymes. There were other less serious side effects. I was taken off the 150 but when my liver readings returned to normal I was put on the 100 dose twice daily. Still diarrhea issues but liver readings are normal.

    I am soon to be 77 and still not requiring supplemental oxygen. My last  pulmonary lab results in December 2022 indicated that my lung function had not deteriorated which my pulmonologist attributed entirely to the fact I do something physical every day. Things like walking , golfing, gym workouts( cardio , weights and core). She was adamant it was not the OFEV as she says all it does is slow the progress of the disease . It does not stop it so her theory is that it is what you do individually to keep your lungs as healthy as possible. When I walk I try to include a bit of uphill walking and I do still walk the golf course but the one large dreaded hill is getting very difficult to climb. When I walk uphill I am very short of breath.
    I am due for another CT scan around the end of June so if I have anything new to report I will do so.
    In the meantime keep as well as you can , exercise as much as you can and try to think about the good things in your life and as little as possible about IPF


  • don-moffett

    August 22, 2023 at 3:30 pm

    I have been on on Ofev for 2.5 years.  My last appointment was in January 2023 and the doctor was very surprised at the very slow rate of growth, i a still at stage II for over a year.  He moved me to an annual appointment, so in January 2024 I will have a report.  I feel good, I still work in the yard, and took the high Altitude test (HASP) and was cleared to fly without oxygen assistance.  So I would say that Ofev is working.

Page 2 of 2

Log in to reply.