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← Return to Pulmonary Fibrosis*
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Hi, @raincrowe - I've merged your post with this discussion so that you could continue your discussion in this thread called "Pulmonary Fibrosis*," and talk further with members like @robinson @wba3721 @mycatischi @frane1939 @windwalker and others.
I would add that generally Mayo Clinic will not accept patients where it is felt there is nothing further to add to their care. I trust that some of these members will have further insights for you from their experiences.
You mentioned treatment with Nintedanib (Ofev) and that you can't tell much difference. Wanted to confirm you were also saying it made you feel worse?
Replies to "Hi, @raincrowe - I've merged your post with this discussion so that you could continue your..."
It is really hard to know if OFEV makes me feel worse because everything is a continum and we can't go back and do it again for comparison. We continue to change physically so I think we have to take our best shot and hope it was a good call. I'm continuing with OFEV for now.
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OFEV did give me stomach discomfort and I kinda experimented around with not taking it and I just decided to not take it. I read that is one of the side effects. It is interesting that even though Pirfenidone & OFEV are both FDA approved to be effective theoretically to slow the progression of IPF but NOT for everyone. There is not any actual facts proving how effective it is for a given individual.
I still have some left so my might start up again. My appointment with Mayo is 11-27-2018 and I have not heard anything to the contrary.