NAC N-Acetylcysteine

[Minify]

I am wondering if anyone in this site with an MPN has taken N-Acetylcysteine (NAC)? I am aware of the research that Angela Fleischman at Irvine is doing; her study is currently focused on finding optimal dose for MPN patients. The study guidance excludes those on an interferon. I am interested in knowing if any of you are study participants, what dose did you use, and whether you noted effects/side effects? And also, if anyone in interferon is also taking NAC? Thanks!

[hunter5582]

I am on Besremi and taking L-Glutathione as an alternative to NAC. L-Glut is the beneficial agent that NAC produces in the body. It serves several important functions, including being anti-inflammatory. I opted for this at the advice of my Integrative Medicine Specialist, who preferred it to NAC. I have taken NAC when the L-Glut was not available. I have experienced no adverse effects from L-Glut or NAC. While it is hard to tease out this agent from the other anti-inflammatory regime, my sense is that it does help.

[Minify in reply to hunter5582]

Thanks, Hunter. I am also interested in the mucolytic properties of oral NAC. I developed mild bronchiectasis following either the PE or Covid (or both - they happened within a few months). I’ve been taking Guanefisin with excellent results, but am going to talk with pulmonary specialist next week about switching to NAC. Since there is evidence that the anti-inflammatory properties of NAC may be beneficial in MPN, I am thinking it might be a good option for me. One drug helping two conditions! From what I can tell 600mg twice daily might be the recommended dose.

[endlessfun in reply to Minify]

My husband and I both take NAC. I have been taking for years for abnormal kidney function tests and my labs are now normal. I never had any side effects from NAC. My husband started on NAC last year because we saw it was being studied for MPN's. He has ET with CalR mutation. He is 87. He failed HU and is only on baby aspirin daily. His Platelets were up as high as 1.2 mil but now 800-900. He has no other symptoms other than the elevated platelets. We think the NAC has helped with symptoms. Otherwise, he is on wait and see approach due to his age, considered "low risk" and his lack of symptoms.

[C2Cnext]

I take NAC daily and am also on Pegasys (I have PV). I started the NAC before I started the Peg and wasn't aware of any contra indications. I take a variety of supplements that are supposed to be anti inflammatory so echo Hunter's comment that it's impossible to parse out the effect of NAC. I also follow a stupidly healthy diet to not raise an inflammatory response.

I don't think it's doing any harm (could be wrong of course) and there is a positive psychosomatic effect of taking something trying to lower inflammation. The challenge with understanding the effect of a supplement is how it interacts with all the other lifestyle and dietary factors. Would love to read anything you find that explains the NAC effect.

[GPKM]

Hello, I have PV and I have been supplementing with NAC 1800 mg a day from last one year. I divide the dosage into 3 times a day, that is 600 mg in the morning, afternoon and night. I prefer to take it in an empty stomach. I did not find any side effects as such, but it has helped me tremendously with my fatigue. It has helped me positively with my stress and kept me relaxed. Hope you find it helpful. Thank you

[ainslie]

A functional doc told me as we get a bit older we are not so good at getting LGlutamine from taking NAC , I assume she meant not converting. She advised I take L Glutamine instead. I don’t know if we can test L Glutamine levels or not. If we can presumably the levels could be tested while taking NAC. I don’t know if taking L Glutamine is doing me any good but my immune system seems pretty good , I’m on high dose Rux which alleg can be a immune suppressant yet my partner got Covid recently but I didn’t, presumably I can’t be too immune suppressed. Interestingly she has had umpteen Covid vaccines and I only had the first 3.

Maybe the L Glutamine and my healthy lifestyle helped.

[Ovidess]

I have PV and am on the lowest possible dose of Besremi. I've been taking NAC throughout, so I would not be able to tell if it was causing some of my symptoms. Although my tiredness and stomach issues are prominent, I would not know if NAC is involved in any way. Anyone have good articles on LGlutamine and NAC? Like Ainslie, despite my PV ailments, my immune system may have been aided by NAC; I've not had Covid, tho all around me have had it at least twice. Too bad integrative med specialists are not common in my area. I'd like help with all this.

[jmctrek]

I was among the cohort of participants taking 600mg NAC (twice daily for 3 months) in Dr. Fleischman’s research project. I have ET and was on aspirin therapy during the study.

Some positive side effects were less fatigue and better stamina during my exercise routine. I didn’t experience any adverse side effects and my blood values remained stable. After the study, I opted to reduce the dose to 600mg once daily for convenience and didn’t notice any difference.

Not sure if the study is still ongoing, but from my understanding, the groups after mine were incrementally taking more NAC on a daily basis, up to 2400mg per day.

[Minify in reply to jmctrek]

I wanted to get into that study, but I am on Pegasys and patients on interferon were excluded., the study is currently just trying find safe dose of NAC for patients with MPN. It’s still ongoing.

[Minify]

Gosh, this is all such good information! I will likely be adding NAC to my regimen and will check out whether L-Glutathione might be a better option. Thanks so much, everyone!

[Minify]

I was researching the mucolytic and mucoregulatory effects of NAC and found this article informative. It’s been used for cystic fibrosis for years. Since I recently developed bronchiectasis (after PE and Covid), I am definitely interested in starting NAC. I’ve been taking Guanefisin which has eliminated my chronic cough, but I think NAC will be a better option for me.

journals.sagepub.com/doi/10...

[Island-Lady]

I have been taking Pegasy for the last two years and was not aware of any contraindications with the NAC which I have probably been taking for four years, once a day, 600 mg. As many have said, it is difficult to tell which supplement is helping when you’re taking quite a few, which I am. As someone else mentioned here I am also also on a ridiculously healthy diet and exercise routine. I do still get tired and don’t have the energy I used to, but all in all I feel very good. I will look into the option of the l glutathione. So wonderful to have so much information from this group and learning of others experiences. I really really really appreciate it.!