Using anti-fibrotics to treat ILD

I have been on OFEV for 2 weeks and haven't experienced any of the horrendous side effects described. Haven't changed my diet, and while i do use sunblock everyday, avoiding sun in Arizona is like avoiding rain in a rainforest. Impossible. I'm on 100 mg.

Thank you. Even the manufacturer's package insert paints a worrying picture of side effects. Especially the GI side of things.
I think the issue with avoiding sunlight (UV radiation) might come from Ofev's rival, perifinadone.

I have been on OFEV since January 2024. I have adjusted my diet to not aggravate GI issues. I have not avoided the sunshine (I live in Florida) and have not had any problems. After 6 months my pulmonologist increased me from 100mg 2x daily to 150mg 2x daily, then I had horrible GI issues. Stayed at that dose for a month going from bouts of diarrhea, then taking Imodium, then back to diarrhea. Was no way to live, so I went back to 100mg. Have had no major problems at this dosage. Since being on OFEV my PFT lung function numbers percentage decrease has been less compared to before I took OFEV, but they are still decreasing. I feel OFEV has helped me.

When I was diagnosed with ILD I was given Prednisolone 50mg and eventually Mycophenolate (I cannot recall the dosage). As a result of the Mycophenolate, I developed a melanoma on my neck. This was removed and caught early so did not spread. I was then changed to a different medication post-transplant. Unfortunately for us we have to roll with the punches and deal with it. The alternative is to slowly come closer to the side effect of ILD which is a place I have been after becoming hypoxic and spending five months in hospital. It is 5 years since that happened and I am just getting over it. I did not have the medication you have as I was diagnosed at a late stage with 20% of my lungs working and a resting blood oxygen level of 81% and 61% when even just walking. I sincerely hope all goes well for you and that you do your best to enjoy each and every moment you can in life.

I've been on OFEV since April 1st and so far haven't experienced any of those gruesome reported side effects. It was suggested to me 8 months ago. I refused because of awful reported adverse effects. When i finally decided to try it, it was a given that i would stop immediately if i had to. So give it a try is my advice. You can always stop. Ann in Arizona

Thank you, Ann. I am leaning in that direction. I see the specialist in three weeks and will revisit the subject then. The literature, including Boehringer's own, paints such an unpleasant picture of the drug and its side effects. Yet any response I have had from people who are using it, both here and on other sites, suggest that the reports of those nasty side effects might be overblown.
I am taking Myfortic and am now being tapered off prednisone. I have had no side effects from the Myfortic but I would not wish prednisone on my worst enemy. OMG the negative effects from it were terrible.
Thank you, again.

Whatever you decide, I wish you the best of results.

Hello, I am new to this website and lung problems. I had some lung damage from chemotherapy drugs as a child but by body adapting to those and I had no issues until 1 year ago. One year ago I was in a bad car accident some older gentleman ran a red light and hit my car and 2 motorcycles. The air bed broke the powder got into my lungs, and I also had a fractured sternum, but the hospital did not pick us up till months after of me constantly complaining my pulmonologist picked it up and now because I couldn’t cough out the stuff in my lungs I started to fall and have my oxygen drop. I was in the hospital for a week and before this they kept saying I had a virus, but I have no virus. They said it was something I inhaled, which I told him it was from the airbag. Because the powder from airbag sat in my lungs, it caused inflammation, and I got pneumonia. I was so sick couldn’t walk then I got blood clot in my right leg and then I started getting a cough from the pneumonia. Then I got stress incontinence had to start wearing depends. I was put on high steroids, which causes a lot more problems and I went home and oxygen 24 hours a day sitting down without oxygen my O2 90s but any type of activity my oxygen drops to 74. I have a portable oxygen tank, but even with that sometimes my oxygen is at 74. I don’t know why this keeps happening. I am on microphone eight and tapering down off of steroids. My doctor is planning to do a breathing test on May 14. See if the fibrosis has gotten any worse. And also check if my inflammation has gone down. But all of a sudden he’s talking about maybe I might need a lung transplant which scared the living daylights out of me. Has anybody’s breathing gotten better or without having to have a long transplant? I’ve had cancer since I was 13 years old four times and I’m off treatment now just starting my fourth year radiation that I had as a child. What caused the other cancers. Overall I’m healthy. The only problem right now is my lungs. I see some people are talking about another drug called Myfortic that their doctor uses instead of prednisone or micro phenate. Does that drug work better? I think I need a second opinion. I live up in Rochester New York. Does anybody have anybody they recommend for a Lung specialist? If I have to have a transplant, I’ll have to go down to New York City. My pulmonologist mentioned that he was going to see if my fibrosis got worse if it did then he was gonna put me on a medication that you guys were talking about that had bad side effects called OFEV? Does any of these medication help my o2 levels come back to normal. I was very active before this all happened ready to start my black belt in Kuk Sool Won martial arts. Now I’m homebound can’t go anywhere cause I can’t walk or around people cause they’re suppressing my immune system wondering if anybody has any suggestions for me. Any help is greatly appreciated. I’m just really scared right now. Don’t know what to do. Thank you.

Dear help2025,
I am sorry you are going through this, but glad you've reached out for support. My experience has been it's a slow process to discover what works for your body and its important to track symptoms and drug reactions to guide your treatment. Ofev slows the progression of the Fibrosis, but it will not increase your oxygen levels per se.
One of the best things you can do, in my opinion, is to practice some sort of mindful breathing and/or relaxation technique. Stress, and having our bodies in fight/flight mode really impacts our breathing.
There are many non pharmaceutical supplements you may find helpful for supporting your overall health. It's your lungs but it's really your whole body that is affected. Google Scholar is a wealth of information, without the product sales pitches.
Sending you healing energy!

Another resource you may find helpful is the Pulmonary Fibrois Foundation. They have a website and a YouTube channel. Lots of educational information, and support groups, both online and in person.