User Reviews for Ofev oral

I'm in my third week of taking Ofev, 150mg 2XDay. I was diagnosed with IPF in 2009. Put on Oxy then. My last CT scan (Jul 2015) indicated honeycombing had started. I was hesitant to start a new med that was fast tracked to the market that offered no cure. I finally agreed to start recently, three weeks now. I've had the terrible side effects that everyone describes. I can't imagine existing in life where I stay on the toilet about the same amount of time I sit in my recliner. That's about all I'm able to do now. I'm calling my doctor Monday to let him know I won't be needing a refill.Read More Read Less

I have IPF, and I have been on this stuff since it was released by the FDA. TIPS from a career troubleshooter: - If you are not skinny yet, get there. I lost 100lb on the 30/10 diet and it made a gigantic difference in my breathing! - You have to take Ofev with a decent meal. - You need to have 12hrs between doses or you better be close to a bathroom. - Sleep on a wedge pillow to avoid acid reflux. Who knows if it's working. I just thought I would share what I have learned. Avoiding ALL acidic foods like tomatoes, because acid re-flux could be the cause of IPF? Read More Read Less

I was diagnosed with IPF about 3 years ago and I've been taking OFEV for about 6 months now.I too have the fatigue and sometimes some slight stomach irritation. I dont feel any better but ive been told by my Dr. the only real way to know if its working is by having current Pulmonary tests compared to past tests. The manufacturer showed very promising results from their own tests-many patients showed the rate of disease progression cut by 50%. There's no promise by the makers of a cure or 'improvement' other than the possibility of slowing the progression of the disease-IE getting sicker slower.Bear in mind there is NOTHING else out there for medicinal treatment of Pulmonary Fibrosis except Ofev (nintedanib) and their competitors Esbriet (pirfenidone). So the way I see it if this is my only chance of living longer (short of a lung transplant) ill take it.Read More Read Less

I started taking Ofev in June 2015 for idiopathic pulmonary fibrosis. I did have some stomach discomfort but then started having diarrhea, stomach upset, nausea, muscle pain and trouble walking even with oxygen. I stopped taking it after 1 1/2 months. My pulmonologist told me I should stay on it. Supposedly it slows the progression of the disease. I started taking it again. All the effects I listed above are still there. The diarrhea has became somewhat manageable. No one can tell me how much it slows it or how far advanced my disease is. I have had a CT scan and lung biopsy. I feel like the patients who have been prescribed this medication are the test subjects for results! If no one can tell us what causes this disease, how can they say this medicine will help it after only a 2 year study? Read More Read Less

My sister started the medication in April 2015 for pulmonary fibrosis. She was unable to take it because of nausea and fatigue. They took her off of it July 4, 2015, and she passed away July 22, 2015. I think this medication caused her early demise. She was only diagnosed with Pulmonary fibrosis is November 2014. I may wind up with Pulmonary fibrosis myself. I am 62. My sister died at 65. Our father had pulmonary fibrosis and lived 2 1/2 years after being diagnosed, and died at 81. It is a horrible, horrible disease, but if I get it, I will probably do nothing but oxygen. Read More Read Less

My father is taking this and while he has stabilized, I'm not convinced it's the medication. Absolute terrible diarrhea!

How in the hell can you tell if it is doing anything beneficial at all? People with IPF can live for years or die within 3yrs of diagnosis. I think it's impossible to accurately review effectiveness, but I am absolutely sure someone is making money. I wonder if anyone else out there is experimenting with alternative medicine and getting results that are measurable.

Bad diarhea

I have been taking Ofev for 4 months and it appears to have had no positive effects. In fact, my condition appears to be worsening. Side effects have been fairly minimal except for occasional diarrhea and some abdominal pain. Since doctors do not know the cause of IPF and hence when the actual onset began it is hard to actually ascertain its effectiveness. I am contemplating getting off the medication.

I had absolutely no side effects. But after two weekks, I noticed something that kind of felt like nausea set in. My appetite got really bad and when fatigue set in, in a matter of 3 days my stamina spiraled to almost nothing. Unrelenting fatigue set in. I stopped taking the meds on the 3rd night and the next morning my energy started going up. I did not continue with the meds.

My husband has Idiopathic Pulmonary Fibrosis. He just recently started taking OFEV. He is worse off now. He has very bad muscle aches and can't walk. He has been nauseated. He can not take care of himself now. He is 76.

My 86 year old father has been taking this drug for a week. He has developed severe diarrehea. Unfortunately he is probably going to have to discontinue use. We haven't noticed any benefit yet