NAC N-Acetyl-Cysteine and symptom burden - MPN Voice

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NAC N-Acetyl-Cysteine and symptom burden

Paul123456 profile image
13 Replies

Does anyone have any thoughts on NAC, an over the counter anti-oxidant which allegedly can protect wild type Hematopoietic stem cell clones from inflammation and extend the lifespan of JAK2V^17F mutant mice.

See this article dated 2015

hindawi.com/journals/mi/201...

And this article by Dr Robyn Scherber, a nutritionist at Mayo, re symptom burden.

bloodjournal.org/content/13...

The table listing symptom burden against all the most common supplements is interesting albeit probably of little clinical significance. NAC appears to offer the the most effective symptom relief but only 0.9% of the respondents were taking it.

I’ve also seen another Leukemia slide, dated 2013, which credits NAC with reducing spleen, DNA oxidative damage double strand DNA breaks and restoring blood parameters in JAK2 mice.

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Paul123456 profile image
Paul123456
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13 Replies
fee13 profile image
fee13

I unfortunately cannot afford to trial it as yet but very interested in studying it further.

beetle profile image
beetle

As usual, Paul, you direct us to some fascinating and informative articles. To be honest I had never heard of NAC as a supplement but it does look interesting. I will definitely discuss it with my haematologist on my next visit. If it could help reduce my spleen it would be very useful as Ruxolitinib appears to be losing control for me now. Have you tried taking it and if so did it change anything for you?

Paul123456 profile image
Paul123456 in reply to beetle

I’m not convinced that it can reduce spleen or improve blood counts but it does appear to help reduce inflammation. I’m very focused on inflammation because there appears to be correlation between high inflammation and progression/symptom burden. Also, I’m wondering if low inflammation can effectively ‘clear’ the pathways used by Pegasys, improving efficacy.

Ruxo is already anti inflammatory. Do you know what your inflammation markers are - CRP and LDH?

Best Paul

beetle profile image
beetle in reply to Paul123456

Looking at my results these have not been measured for some time. Must be time to ask about them

Meatloaf9 profile image
Meatloaf9

Hi Paul, thanks for the post. Can you tell us where to find NAC and what name does it go by if other than just NAC? Thanks.

Paul123456 profile image
Paul123456

Just Google N-Acetyl-Cysteine Amazon

Best Paul

Anag profile image
Anag

Hi Paul, you’ve made a great point. I believe that a healthy and balanced immune system is the key to our health. One of the important columns for our IS health is our body’s glutathione production. Lo and behold, NAC found in good quality animal protein or as a supplement boosts our body’s own glutathione production, which in turn help our IS, cell and DNA repair and other wonderful things! With strong antioxidants though, it’s a must that we take them very carefully, else they get rid of our HU, Pegasys or Anagrelid. My Anagrelid has a half life of 1.3 hours. That is, I must wait at least 3 hours before I take an antioxidant and then 2 hours before I take my next pill. I’ll read the info you sent above tomorrow. Many thanks for sharing!

Paul123456 profile image
Paul123456 in reply to Anag

Thanks Anag. Why Pegasys? I assumed stored in the liver for a week plus raises Interferon levels which remain high, only tapering off after discontinuation.

One of the reasons I started taking NAC was to improve Peg efficacy by reducing inflammation. I have TET2 mutation as well as JAK2 and TET2 blocks Peg pathways with inflammation, reducing Peg efficacy.

Of course the $m question is which pathways is Peg using. We know that smoking/TET2 are problems bout no Hem I’ve asked can say more.

My strategy is a healthy lifestyle (red wine aside) and target inflammation as low as possible. I think low inflammation could prove very important

Best

Paul

Anag profile image
Anag in reply to Paul123456

Yes. Inflammation is the root of all evil. Thanks for the info on Peg. I have banned all chemicals from my home, use only cosmetics and products that I can also eat. I’m slowly getting all amalgams and root canals removed. For 18 months I have eaten almost all organic and have rid myself of almost all grains, milk products and night shades. My clarity of mind and body is now as it was at 40. I’m now 54. BTW, Red wine is good and allowed. With limits of course. It’s the white stuff and beer that my body doesn’t like. I will look into NAC for myself. Best wishes!

Paul123456 profile image
Paul123456 in reply to Anag

Thanks for reply. I eat a lot of whole grains (porridge, home made bread, brown rice, wholewheat and spelt pasta). All organic and chosen for highest fibre.

Trouble is if we reduce these carbs, what do we replace with in order to have a balanced diet? I try to avoid too high an iron intake.

mhos61 profile image
mhos61

Thanks Paul,

you are indeed a huge asset to this forum, researching for your own interest - but allowing us access to your findings too.

Thanks again, it is really very much appreciated.

Mary

Daisy62 profile image
Daisy62

I'm interested in doing some research on NAC and was curious 9 months following this initial thread if anyone had any updates on whether they had experienced any benefits to it's use?

Paul123456 profile image
Paul123456 in reply to Daisy62

NAC is a tricky one! Latest article I’ve seen says it reduces thrombosis risk in mice, increasing life span. Other articles more tricky to interpret, might be beneficial for short term use but long term use needs greater research to determine whether benefits outweigh possible risks for MPN patients ie it definitely appears to do something but net benefit.......

Bit like Vit D, in many ways good but one article suggests might speed up progression.

Sorry to be so vague, there just isn’t enough evidence at this time.

FWIW, I’m now taking NAC for a week, then two weeks off.

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