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Larry (Arizona) on 04/06/2022
0 out of 5 stars

I also have IPF, for 4 years now. They put me on OFEV. I took it for a couple of years but I just got tired of all the side effects. As to the cost, $9000.00 a month but I paid nothing. Have your Doctor contact the company that makes it and they will give you a grant for the cost.. Good Luck.
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Replied By Shelly10983 (Fl) on 03/04/2018

Hello, my husband was diagnosed with IPF about 7 years ago. The first doctor put him on Prednisone for about a year, which did nothing except suppress the cough and his symptoms. Plus, it gave him serious mood swings and gained about 30 pounds. There are only two drugs for IPF Esbriet (which gave him horrible side affects of extreme itching and discolored skin when he went in the sun). I should say even in low light his skin turned a purplish red and unbearable itching.

He has now been on OFEV (another approved drug for IPF. Although it doesn't stop or improve the progression, it does seem to help. However, you have to do more than take these drugs for IPF. Whether it is a homeopathic treatment or oxygen, these two drugs don't seem to be enough. I am researching into herbal medicine in addition to OFEV in the hopes of improving lung function. One thing for sure is to keep away from others with colds or flu. When you have IPF and are exposed to colds or flu, it seems to intensify ones IPF symptoms and can linger for weeks.

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Replied By JD (Australia) on 12/12/2022

Ofev is a terrible drug with horrific side effects.

My dad has had it for over 3-5 years now. Lost so much weight, no appetite etc. Had a heart attack a few weeks ago from it. Another side effect. Has not taken it for several weeks now and has got his appetite back and colour in his skin. Figuring out another natural remedy as im sure theres plenty out there. WOULDN'T IHALLING PURE OXYGEN DO THE TRICK, CONSIDERING the lungs can start to heal from ovygen getting into the blood stream???? These drugs they have designed for this illness aren't a cure only trying to stop the immune system from creating scarring on the lungs. Doesn't seem to be working in year 4-5 of the condition. I recommend stem cell therapy but I'm not sure a doctor studying medicine wont like that word. (stem cell therapy)

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