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Nov 4, 2018 · Pulmonary Fibrosis* in Lung Health

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.

Nov 4, 2018 · Pulmonary Fibrosis* in Lung Health

I have been diagnosed with IPF since 2014. I have always had a chronic cough but lately I cough more sputum and am borderline short of breath. I am on 2L of o2 at bedtime. Not sure if it helps or not. I have been involved in a research program at the University Of Iowa and took perfinidone for 1.6 years that did nothing?? I got started on OFEV and I can't really tell much difference other than it make sense me feel worse. I am also involved in pulmonary rehab program. My cardiologist thought maybe I should be evaluated at Mayo so he made reservations for me on 11-27-2018 at the pulmonary clinic.

I am struggling with the decision to go? I am wondering what Mayo is going to do different than what everything I have been through the past 5 years? We have good doctors here in Iowa and I am constantly being told there is no magic bullet and I understand. Hummmm….. Any one have any words of wisdom?

Nov 3, 2018 · Pulmonary Fibrosis* in Lung Health

I have ipf

Mar 30, 2017 · IPF How To Cope with Sick Feelings in Lung Health

Sorry it took so long to reply. I live in Cedar Rapids,IA. I go to the University Of IA for the research program.

Mar 18, 2017 · IPF How To Cope with Sick Feelings in Lung Health


I take have been Pirfenidone 267mg X6 daily and I can not tell much difference either. It is just supposed to slow down the progression. I try to walk 1.0 hour daily and it helps. I participate in a research program and it doesn’t cost me anything. They pay me a very small amount to participate.

Jul 26, 2016 · Pulmonary Fibrosis* in Lung Health

WOW !! IPF for 16 years. I am interested in knowing what are the acid reflux pills that you take. I take Perfinidone through a research program reluctantly but that is about the only med available.

Jul 25, 2016 · Pulmonary Fibrosis* in Lung Health

I am taking Perfinidone 6 capsules daily through a research study since 5-25-2016 and it is supposed to slow the progression. It does almost eliminate my cough but it has side effects that can effect some but not all. The biggest one is fatigue.