Prescribed Ofev, anyone have experience with this drug?

I started Ofev 150mg twice a day over a year ago. I had GI issues at the beginning and now I am doing better. How you would tolerate the meds is very personal so be easy on yourself and adjust your foods accordingly. What helped also with diarrhea is taking the iron pill which I was taking to improve my hemoglobin. Hope my experience is helpful.

Thanks so much for your response. Do you think the Ofev has helped your lung function? I'm still struggling with getting over this pneumonia. Did you use any Imodium AD or Pepto Bismol for the diarrhea? My hemoglobin was low after knee surgery but has come back to normal after taking iron. I'm thinking I will wait a month or so to start Ofev. Hopefully I will be over this pneumonia. Also I'm starting a new medication for my RA, Actemra. So I'd like to see how that works.
Thanks again for your help. I really appreciate it!

I took Ofev for a couple of years. The first 3 weeks after starting it were the worst. Stomach cramps, nausea, diarrhea, fatigue. Then my body seemed to adjust to it. I did take it with an antidiarhheal if I was going to be away from the house. Also drank a protein drink with it. Make sure you take it with a relatively high protein, not just carbs. And take it in the middle of your meal, dont wait five or ten minutes after you've eaten and then take it.

Thanks for the tips. I'm curious as to why you were prescribed it and why you stopped taking it. I have some lung damage from RA and scleroderma and the doctor hopes it will slow the progression of damage.

I have Hypersensitivy Pneumonitis, a formof ILD, Ofev was prescribed for that in the hope it would slow the progression of the disease. My understanding is it works in 40 to 50% of people with ILD. I have stopped taking it because now I am on the transplant list. It can wreak havoc with your stomach and cause Irritable Bowel Syndrome in a small segment of users. I was having occasional issues with it so was told to stop it now that I'm active for transplant.

Good luck with the transplant surgery. I know it takes a while on those lists. My sister is on an active list for kidney transplant. Hopefully we can all get the help we need. Lots of people to pray for!
Carol

Thank you, hopefully we will all move on to better health and improved lives.

My wife has pulmonary fibrosis, and as her symptoms started to worsen…..she was prescribed OFEV 150 mg , twice daily.
Almost immediately, she started having GI issues, despite sticking closely to all the dosing instructions.
After about three weeks of usage…..she wanted to stop, as the side effects were becoming intolerable. We reported this to her pulmonologist….. and he suggested stopping the 150 mg dose, and re- starting with a lower dose of 100 mg , twice daily. And see how that works out.
Just getting started now on the lower dose. Will update you all when we see more results.
Also, to those who are currently using OFEV 150 mg…..there is an option for a lower dose available.

That's good to know. I haven't been prescribed any yet. I'm going to wait a month or so to get over this pneumonia and see how the Actemra works for my RA. I'll definitely keep that in mind.
Carol

My husband tried Ofev for his pulmonary fibrosis. But the side effects were so bad for him that he decided he would rather have quality of life instead of quantity. We liked to travel, so the diarrhea made travel difficult. But medications affect people differently. So don’t rule it out. It is very expensive, but he had excellent insurance that paid for all his medications.