Pulmonary Fibrosis News Forums Forums Treatments and Science Ofev (Nintedanib) How are long-term (4+ years) OFEV users doing?

  • How are long-term (4+ years) OFEV users doing?

    Posted by patrick-coghlan on March 17, 2022 at 8:18 am

    These forums were created about 4 years ago…about the time that OFEV trials were just finishing, I believe.

    I’m very interested to hear from participants with various forms of PF who’ve been on OFEV pretty much since the beginning to hear how it has helped them.

    rod-danner replied 2 years ago 9 Members · 11 Replies
  • 11 Replies
  • Tim Costar

    March 17, 2022 at 11:25 am

    I was 4 years in January. Started originally on 150 but after 9 months of uncontrollable diarrhea was scaled back to 100. Everything was stable until my last PFT/6MNTW last November when my stats fell off significantly. This resulted from a fall in August where I fractured 5ribs so the hope was things would be back to normal after a few months. I’m due to have next follow up along with CT scan in May. I’m not confident my stats will be that much better and concerned that the fall resulted in an exacerbation that has taken me to a lower plateau in the disease progression. I’m also concerned that this may result in withdrawal of funding for my Ofev.

  • russ-sukut

    March 17, 2022 at 1:45 pm

    I stared OFEV in September 2016. I began t experience side effects around Christmas of that year. Mostly severe lower bowl discomfort at night, some diarrhea, but not problematic. I put up with this discomfort for 15 months. At that time after consulting with the OFEV nurse my dosage was reduced to 100 mg. per day. Since going on the 100 mg doses I no longer experience lower bowl discomfort, and am able to sleep through the night. When I went on the 100mg dosage I also started taking metamucil twice a day which has normalised my bowl function.

  • ian-neilson

    March 17, 2022 at 3:08 pm

    I was diagnosed with PF and started on pirfenidone in 2016.  I am also on omeprazole and a statin.  My younger brother had more severe PF with a fulminant course.  He had clubbing of the nails for decades.  His diagnosis was made very late.  My diagnosis was early in my symptom history so I started pirfenidone early in my disease course.  I believe that is one reason that I have had minimal symptom progression.  I have been followed at Duke and now at the Brigham in Boston.  I underwent transplant evaluation in 2019 at the recommendation of staff at BWH but my disease was not severe enough to consider being listed.

    My only side effect with pirfenidone is restless legs when I go to bed. I have been fortunate to get assistance with copays, even with the transition from private insurance to Medicare at the start of 2022.

  • jbutch41

    March 18, 2022 at 8:00 am

    I was diagnosed with IPF May of 2017.
    I started 150 mg of OFEV June of 2017. My numbers have declined slightly, but no where near transplant ready numbers. My next Cleveland Clinic follow up is in June and this will be 5 years on OFEV.

    • patrick-coghlan

      March 18, 2022 at 10:35 am

      That’s good to hear that people like yourself are seeing reduced progression for almost 5 years with IPF.

  • donald-salzberg-md

    March 18, 2022 at 8:53 am

    Good morning. Im almost at the 4 year mark on OFEV 150 mg bid. Interestingly, I starred on Metformin (100 mg SR) two months ago. Metformin has a synergistic benefit to OFEV with regards to anti-fibrosis. My last DLCO (diffusion) actually improved after 2 months on Metformin. I have occasional diarrhea but nothing terrible. I did go to the Brigham and had signed up to their transplant system. I’m also nowhere near needing that but you never know. As I have more support in NY than Boston I plan to hook into the Columbia Hospital system. Recent article shows a very low BMI fairs worse than a BMI if 22-29!!  Getting a HDCT next week even though my PFTs are very stable b/o slight increased incidence of lung cancer with IPF


    • patrick-coghlan

      March 18, 2022 at 10:42 am

      That’s amazing to hear that your PFT numbers are very stable.  Next step: reach the 10-year mark!

      I’m starting OFEV next week with my next PFT in July.  I’m hoping the medication also helps me reach the 10-year mark.  Right now my view is everything after that is gravy.

    • kris-manian

      April 11, 2022 at 6:50 pm

      Hi Dr. Don thanks for sharing your experience with Ofev. I am curious about Metformin. Did you take it for  diabetes?

      how did that help with your PFT? Is it by controlling the blood sugar level?


  • Charlene Beck

    March 19, 2022 at 8:48 pm

    i have been diagnosed bout yr ago and started on OFEV 150mg  2xd w no side effects.  cough now gone or nearly gone.   I had to beg and cajole to get the drug

    my brother who has IPF also was on this drug 6 yrs and now progressing to need for transplant.

    I am scared and feel fearful a lot.   my mom and brother died of I{PF and now my younger bro is on transplant list.






    • patrick-coghlan

      March 21, 2022 at 9:40 am

      There are some useful graphs in this IPF study.

      Both drugs seem to add several years to the average survival time for patients who survive at least 2 years.  There doesn’t seem to be a significant difference in mortality during the first 2 years.  I can only assume this is a result of the amount of disease progression that has occurred when a patient begins the medication.  Interpreting the graphs, most of the benefit will accrue to patients who start the medication in the early stages of their disease.

      I am not familiar with Weibull vs exponential distribution, which have different predictions for patient survival.

      Of the patient group that survives the initial 2 years, roughly half can expect to survive to the 10-year mark according to either method.


  • donald-salzberg-md

    April 12, 2022 at 5:12 pm

    Hi Kris:

    thank you for reaching out. I started taking metformin three months ago because my HbA1C crept up to 7.0. I saw a few articles that discussed the fact that Metformin  has some anti-fibrotic properties so it is synergistic with OFEV. I would not have started Metformin solely to help treat my IPF as there is no recommendation for that.

    On a separate issue does anyone here suffer with chronic HOARSENESS due to excess mucus being formed???  I briefly tried Mucinex with no benefit. I would love too o hear

    Don Salzberg md

  • rod-danner

    April 13, 2022 at 11:19 am

    I have been on OFEV for 6 years as of two days ago. The only actual side effects that have been a problem have been some stomach cramping and the associated diarrhea. I have been able to keep the diarrhea mostly under control with Loperamide (Immodium) by just taking one when the first sign of loose stools appears. If I am going to be traveling for the day, I take it preemptively. Over the six year period, my stats have decreased, which is to be expected. I am certain that the decline is much slower than it would have been without the medication. I am now on 2LPM O2 pretty much when ambulatory, although I do recover pretty quickly. I take 150 Mg twice daily, always with food of some sort. I have experienced lack of appetite over the past six months or so, but I imagine that is more attributable to the disease rather than the medication.

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