Viewing 11 reply threads
  • Author
    • #28105
      Doug Taylor

      My only major side effects after 7 months of 100mg OFEV 2x a day is SOB and calf and thigh muscle weakness. Does anyone else have leg muscle weakness? I hope that the problem will soon subside because it interferes with my walking.

    • #28107
      sally williams

      I do not suffer from that, bu I do Pilates and maybe that stretching helps. Good luck, not walking isn’t good.

      • #28315
        Augusta Adkins

        I have also noticed some thigh weakness and have been on Ofev 4 months. I am walking more and not out of breath so hopefully it will pass.

    • #28110
      Paulette Daniels

      I can hardly walk more than about 15 steps for the last 3 weeks.  Never thought it might be the OFEV.  I have only been on it for about 3 months.  Doctor as usual, has no idea and no suggestions to help


    • #28112
      John Oman

      I’ve got it too… But assumed it was from old age and depravity…

    • #28115
      Karen Boettin.

      I don’t have that side effect still puking a couple of times a week on 100 x2

    • #28119

      Don’t have that issue but walking and exercising with a 10 lb. bottle of oxygen behind me is not fun.  Still fighting with oxygen supplier and hope to get POC soon.


    • #28125
      Bill Friedman


      I’m 82, diagnosed with IPF one year ago, and on 150 Ofev Q12 h. I play golf, walk 4 miles, and lift wts on alternating days. The Ofev makes me sick, but I have controlled it somewhat with fewer spicy, greasy, or sweet foods. About once a week I miss a dose if the gas or diarrhea gets severe. Try not to miss more than one dose a week. This disease is troubling, and I get out of breath frequently, but just keep doing what I’m doing. Have never used O2. I take daily PO2 readings on a finger meter, In the AM I’m usually at 96-97%. PM I go down to 94-96%.  I can live with this in spite of the gloomy and outdated prognoses. Hope all of you are enjoying this brisk but glorious Spring.  Best, Bill

    • #28145

      Hi @marine1


      Good question – thanks for bringing up this topic! I never related it to my Ofev use, but now that I think of it, my massage therapist (pre-covid of course) always said my calves and thigh muscles were very tight. They often get sore throughout the day too and I tried to increase my electrolyte consumption to see if that would help, but I’m wondering now if it is Ofev-related. I’m going to bring this question to my doctor 🙂

    • #28168
      Joan Thorkelson

      I have been on OFEV (100 mg) for over a year and I have been using a stationary bike (10-12 miles/week) and I have no leg problems – I don’t know if this is a solution for everyone but it works for me

    • #28172
      Paul Polidano

      Likewise,  for 18 months, I have been on OFEV then Esbriet (due to frequent nausea and some puking) back on to OFEV again, after encountering horrible and unsightly skin rash, (which disappeared immediately when I stopped Esbriet) and have now been on OFEV for about 9 months (currently on 100mg x 2 daily).

      During this time I have not encountered any issues with leg muscle weakness. In saying this though I do play tennis once a week for approx 2 hours (with ‘not so energetic’ teammates, I might add) as well as keeping myself as active as possible, so I support Joan’s theory above, that vigorous exercise may help.

      Regards (and good health) to all – from Down under

    • #31057

      I have been struggling with leg muscle pain for over a year. I exercise as much as I can with breathing issue. I kept wondering what else could be causing this weakness and discomfort. I rode horses for 40 years,was a runner, and ran agility with my dogs ,so my leg muscles were strong. Wish we could get a response from ofev.

    • #31060
      Roger Cummins

      This is interesting.  I’m on Ofev/Myco/Truxima for ILD and Sscl.  I had numbness and tingling in my right thigh for about a month.  Then I noticed occassional sharp pains and attributed all this to a pinched nerve.  However, now my thigh is just tender, like what you’d have with a bruise.  Anyone else with something like this?

Viewing 11 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen


We're not around right now. But you can send us an email and we'll get back to you, asap.


Log in with your credentials


Forgot your details?

Create Account