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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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16 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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I had the same issues with Ofev. I have taken Pirfenidone for over a year and not one episode of diarrhea. I have not had issues with the sun sensitivity associated with the Pirfenidone either by just using common sense care. It’s worth a try! ====
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You mentioned supplements. I have been taking “Swanson Lung Essentials” as a supplement for 5 years. It is a proprietary blend of 16 herbs, some of which are of Chinese origin. My IPF has remained almost stable since I first started with OFEV. I do believe the herbs are helpful and would never stop taking this supplement although statistical data is non-existent. I feel it is a cheap form of “lung insurance”. I would highly recommend adding this supplement to your regimen.
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There was a study of people taking NAC and they had to stop the clinical trial because a small portion of patients endured damage to the lungs from the NAC. I believe some people with a certain genome are damaged from the NAC AND I don’t know which genome it is. I plane on doing more research on this and if I learn more I will post.
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Ang,
Yes—my pulmonologist cited that NAC is only safe for Pulmonary Fibrosis patients with the TT genotype. There is potential harm if you don’t have this genotype. This was revealed in the Precisions Study.
My pulmonologist told me this at my February 2025 appointment. The information was also presented at an ILD Research session at the University of Minnesota’s 2025 Pulmonary Fibrosis Patient Education Day in April.
I quit NAC. Not worth the risk.
Klee
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Hello, could you be kind enough to let me know the name of the test to detect IPF TT genetics.
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I don’t know if this is useful information, but here goes. Three weeks ago I had hip revision surgery and I was given multiple meds, mostly antibiotics and vitamins and iron. Also a laxative to counteract the iron (which I took only every other day. I decided not to take the laxative because I thought the Ofev would be enough. Wrong! I was constipated. So I’m thinking the iron pill took away the side effects of the Ofev.
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Here’s what I found in researching. ( Not sure if this is the medical gold standard for testing recommendation) :
Genetic testing for idiopathic pulmonary fibrosis (IPF) can identify specific gene variants associated with the condition. For instance, the TGF-β1 gene’s T869C polymorphism has been linked to IPF susceptibility and disease severity . Additionally, testing for variants in telomere-related genes like TERT and TERC can provide insights into familial pulmonary fibrosis . It’s essential to consult with a healthcare provider or genetic counselor to determine the most appropriate testing based on individual health and family history.
Klee
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<div>I found this article. M I ght be worth a try.</div>
news-medical.net
Dextromethorphan found to have potential in treating lung fibrosis
A common over-the-counter ingredient in many cough syrups may have a greater purpose for people suffering from lung fibrosis that is related to any number of serious health conditions.
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This is indeed very interesting. I read something about this a while back when I was trying to decide if it was safe to take cough medicine at bedtime to ease my cough during the night.
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