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Ofev, Vitamin E and NAC
Does anyone here take Vitamin E and/or NAC? If so, have you noticed it helping in any way? I had to quit taking Ofev on March 1st after about 1 1/2 years. I had developed severe stomach pain so bad I almost went to the hospital…not to mention, almost constant, embarrassing, diarrhea. I tried everything suggested trying to keep it under control.
I guess, because of past diverticulitis problems, every single time I took Imodium or anything else, I would end up with really bad stomach pain and constipation.
Anyhow, after 1 1/2 years of this misery and having to become a recluse, I decided it was no life to live whatever remaining time I have and quit taking the Ofev. It wasn’t long at all that my IPF got worse.
I read something about Vitamin E and NAC possibly helping a little and started taking it a couple of weeks ago.
If anyone else has any info on the E and NAC, please share it.
Thank You!
Judy
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7 Replies
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Hi Judy: I take NAD with resveratrol plus 12 mg of zinc daily. Don’t know if it helps or not but I’m stable. Was on OFEV for 2 years and had to go off due to severe diarrhea. I’m now on Perfinadone, generic for Esbriet. Why don’t you ask your doctor about trying that. It is much cheaper than Ofev. I pay $400 for a 3-month supply from Mark Cuban’s Cost Plus Pharmacy. I have no side effects from it. It’s wonderful to not have to wear diapers when I go out anymore. I was diagnosed 3 years ago. I also take vitamin D.
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I’m sorry you’re going through this experience. Although I don’t have much to add, my husband has IPF, taking 150g of OFEV twice a day – with a Premier Protein shake – and does not have ill effects taking the OFEV with so much protein (30g/container). (He does take NAC, Vitamin E along with other vitamins, supplements and medications. But he says he doesn’t know specifically what all is helping, but to suggest the protein if you take OFEV again, it might help)
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Judy My first pulmonologist put me on 1800 mg of NAC in 2011. I have continued on NAC until now but on 600mg once a day. Started on OFEV in 2016 150 twice a day started having serious gastrointestinal problems a year ago, dropped down to 100 mg twice a day. I take 1/2 Imodium tablet, 2 teaspoons of benefiber daily. I doubt that NAC will slow down the fibrosis but maybe you could try 100 mg of OFEV or Esbriet. They are the only meds that I know that can slow the progression of this horrible disease. Sorry for all your problems. Ray Dingman
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Judy, there’s an assistance fund called “The Assistance Fund” that helps with co-pays and it’s currently open for new patients with IPF.
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I take a substantial number of supplements, including those 2. Not knowing your situation, many can benefit from D3, K2, and a good B-complex.
I was in the Philippines for several years, and they know nothing about IPF and its siblings. So, being on my own, I discovered several things that work for me. At almost 76 and 8.5 years into this lovely disease, I have been deeply blessed…
Stay well
Steve -
Judy, Have you tried Esbriet? I took Ofev for several years with issues many others experience. I have been taking the generic of Esbriet about 18 months and have had no side effects to mention, even the side of effect of sun sensitivity. You might ask your doctor about it.
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There have been a number of studies linking Metformin to a slowing of IPF progression and my doctor prescribed that for me. I also take the supplement Quercetin which has been used in Asia for IPF. And finally I take B complex, B-12, Zinc, D-3, and Termeric. Along with Perfenidone, I have been essentially stable for 5 years with minimal side effects.
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