I've been taking it (N-acetyl cysteine) with Dr approval. I tried two short tests last Dec and it seemed to help. My latest test has been going for ~ 2 months and is less obviously successful.
At the start in Feb I took 600 mgm while I was still on HU only, at 500. My symptoms got worse (usual malaise dizzy etc). I started Bes with Hu transition and nothing special happening via NAC.
I increased to 1200/day NAC and some improvement but normal variation can more than explain that. Then the post from Paul 213456 on allele vs NAC (see upper middle of this thread)
got my attention and I cut the NAC dose to 500-600. Awaiting Paul's next allele results for more info.
I recently added a daily dose of Lysine just because. It correlated to an improvement but that is a long way form "causing" the improvement. Lysine is an amino acid, and in other posts I've noted the table that lists amino acids broadly as beneficial. (see image here) NAC stands out as the best option and this table is why I tried it.
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In the reply below, see my complete metabolic, some evidence of liver/kidney benefits for NAC.
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My conclusion is I don't have one so far; but clearly for me NAC is not the magic ticket I had hoped in the short term. I'm hoping for good old science and its INF therapy to help symptoms over the long term.
My thought on supps is to quit unless I see a reason to keep it going. I'll continue the NAC+ Lysine for now.
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In these three plots from my CMP, my liver and kidney numbers show improvements that begin in correlation to my starting NAC. Each is at all time best or most normal values. But my Dr notes these are not large changes and I didn't need these fixed to begin with.
At least I can say NAC didn't hurt, and might have helped. So I'm not afraid to take it, except for Paul's recent finding vs INF, see above. This CMP was on a mixed NAC dose of 600 and 1200/day. I will keep it to 600 max for now so this trend of fixing something that wasn't broken may not continue anyway.
The three supplements (for MPN related inflammation) I am taking under consultation from an Integrative Medicine doc are curcumin, SPM active (fish oil derivative - pro-resolving mediators), and L-Glutathione. This doc recommended the L-Glutathione as it is what NAC increases in the body. I cannot really say what difference the SPM Active and L-Glutathione are making, but they are not causing any apparent harm. I will say that the curcumin has made a huge difference. I started it to deal with osteoarthritic, particularly in my hands. It has made a huge difference. Much more effective than ibuprofen or meloxicam. It makes a significant difference in level of function and quality of life.
It may well be the NAC is making a more subtle difference. I do not think there is any question that controlling systemic inflammation is a very important aspect of managing MPNs. Systemic inflammation is a real problem that we need to find way to manage effectively. NSAIDs come with significant issues with long-term use and are not a good combination with aspirin or other blood thinners.
I never found any good objective biomarkers for the impact of the supplements; however, less pain and better function are very important indicators of effectiveness. I plan to keep going with what seems to be working,
So far I've not heard from a Voice member reporting clear and sustained symptom improvement on NAC. It may have other deeper benefits as you say; my CMP above may suggest that.
In contrast you're reporting a clear correlation to improvement on curcumin, that is unusual for any supp I believe. I see it has some of the same ROS effects as NAC. Are you aware of any other member reporting a benefit on curc?
I don't (yet) have osteo or other pains. I did have severe ankle bone pain in my late teens early 20's, but since that was 5 feet away from me I could mentally isolate it ( and keep aspirin handy all hours). Malaise in the head is right there and harder to ignore.
While I relied on the table here to start, real experience here suggests to maybe give curc a try.
I have seen other comments about curcumin helping with some MPN symptoms. Interestingly enough some on the Neurofibromatosis forum have also had some success with curcumin. NF1 is another kinase based disorder that is based in the the RAS-MAPK pathway (which is downstream from the JAK-STAT pathway). It was actually my rheumatologist who suggested I try it to help manage osteoarthritis. It has worked quite well. Much better than the NSAIDs and with fewer risks and adverse effects.
I wish I could say that I had more objective markers I could point to, but I will settle for having less inflammatory pain. You may find this article to be of interest.
Do note that not all curcumin is the same. You have to use a bioavailable formulation. Oddly enough there is a brand sold by Walmart - Spring Valley, that contains a particularly good formulation called CurcuWIN. There are other brands that use this formulation, which is the one recommended by my Integrative Med doc. Note that not all of the Spring Valley Turmeric-Curcumin blends have the CurcuWIN. No disclosures to report here. I don't get paid by those guys - I just use the stuff.
Thanks for sharing. I’m glad I haven’t taken it with my statin. In fact, I recently reverted to my original dose of 60mg Atorvastatin. It seems as if there is no lower limit beyond which it is safe for LDL cholesterol to go, and the synergistic effect of statins with IFN must surely be beneficial, in terms of their anti-inflammatory properties.
There has been concern about mixing Rux (antiinflam) with INF, but they have shown to be synergistic in some uses, I've posted one study before. As we discussed here too, the NAC study is excluding INF for this reason. But I think I've seen some reports on statins and INF. Are you aware of any?
I haven't used statins yet, my bloods would be all ok med free if not for the busted alleles.
Dr Hasselbalch mentions their potential use, along with Rux, as possible enhancers of IFN therapy and says that there’s ongoing research. It’s in the article you shared: ‘New Perspectives of Interferon Alpha-2 and Inflammation…’ published in Hemasphere, Dec ‘21.
Thanks for the refresher. I had focused more on other parts of that. This item re statins is of interest right now for some members who are not having enough HCT reductions on INF:
<<A recent study showed that PV patients who are treated with statins require fewer phlebotomies than those who are not>>
Unfortunately the relevant article is behind a paywall.
I see your point that risk of overdoing statins is low (at least for LDL) so it could be worth discussing for those on INF who don't conventionally need it. With Dr approval it might be a low risk way to help cut HCT without cutting WBC too much via INF.
In addition, several studies point out that ‘lipid-lowering’ is only a part of statins’ benefit and that even people whose cholesterol is within normal limits could benefit from them on account of their so-called ‘pleiotropic’ effects - most importantly, their ability to ‘calm’ the endothelium, reduce inflammation, ROS, etc. It might be worth discussing this with your team. Who knows, some of your symptoms might just be alleviated? If chronic inflammation is also the main driver of disease progression, mediated through LDL, I wouldn’t be surprised if the researchers Hasselbalch cites discover that something as cheap and safe as a daily statin should be added to our treatment regimens. Disclosure: I don’t work for Roche!
Curcumin can mildly blood thinning. It may potentiate aspirin to some degree. It has not been a problem for me. The benefits in my case far outweigh any risks.
There is some support for curcumin inducing apoptosis via the JAK-STAT pathway; however, I have not seen any solid evidence that it reduces thrombocytosis.
Hunter, I too have been taking Curcumin for several years and have seen a huge difference with itching (literally went away) and the osteoarthritis in my one knee. I also feel that the Curcumin is helping with other inflammation in my body such as aiding with a strong immune system. Through this whole Covid period I have never been sick with colds/flu or Covid despite working out daily at a gym .......My husband has had 2 bad colds which I never contracted. I don't have any scientific data to support curcumin benefits for PV/ET but for me personally it's been an important benficial supplement. Kerry
I think the heuristic data on the benefits from curcumin is clear on this forum. I think the anti-inflammatory benefits are also clear in the literature. Here is just one example. pubmed.ncbi.nlm.nih.gov/195... .
I do not find it surprising that someone might experience other symptom reduction such as reduction in itching. Systemic inflammation is a very real problem that causes us multiple problems. One of those more significant problems is the risk of MPN progression. There has been active discussion/investigation of the role in inflammation in the progression of cancers, including MPNs. I thinks it is very clear that inflammation is not our friend. Reducing it is a good thing. My own expreience is that curcimin works.
This is the brand and formulation that I use. I take 2 caps - 2x/day (550mg bid). I do apply the "first do not harm" principle to supplements like this. I can say that curcumin has been all benefit and no harm for me. I hope others experience the same.
Good catch. I made a typo (which I fixed above). I am taking a total of 1100/mg/day - 2 doses of 550mg. Specifically. each dose is 300mg CurcuWIN and 250mg Turmeric Extract. I arrived at this dose by gradually increasing the dose after doing a bit a research. There is not a whole lot of definitive information, which makes sense since these formulations vary so much. There is some trial and error involved. This is an effective dose for me at which I experience no side effects.
I have been getting my supplement for WalMart (not where I usually go for supplements). It is a popular brand and they are often out on the shelves, I usually order online.
I take Terry Naturally Cura Med 750mg.....1 pill a day. I get 120 soft pills and on the spendy side........about 75.00 but worth it! This brand was recommended on another MPN forum. Kerry
I have ordered this one. I will continue a few more days with the non-sustained release NAC and then try the Curc. My husband is interested too for pains in his leg. He never takes anything beyond vitamins but this info got his attention. I will update any info we find.
I should be getting my next JAK2 result within next week, the test was done on the 22nd March. This may be significant if under 30% because I stopped Black seed oil and halved NAC three weeks earlier but had not yet increased Pegasys dosage.
I will report the result.
It will be a bit of a possible game changer if it has dropped ie implying that Black seed/NAC may possibly have reduced Pegasys efficacy.
I must stress ‘possibly’ because I think this may be a long shot. But if Angela Fleischman is correct, and that theoretically NAC, by reducing oxidative stress, also reduces interferon efficacy, then I am the ‘poster boy’ for doing everything possible to anti oxidise and would therefore be most ‘vulnerable’ to excessive anti oxidising.
Hence doubling NAC and combining with black seed may have pushed me over the edge when combined with everything else (anti inflammatory diet, probiotics, herbal teas, exercise, supplements milk thistle, ashwagandha and astragalo etc. My only vice is red wine!
I'm doing better today. Most likely the natural variations that are the affliction. But item of note:
I've been trying two types of NAC, extended release at 600 mg and regular at 500. It's possible the regular works better and it seems more mild. The pills are very different in appearance. I took the regular last night.
I also forgot one note, I believe one consistent benefit from NAC in all my tests is reduced arm/finger numbness and tingling. I will continue the regular for now and report any notable findings.
I know this is a very late addition to this thread, but better late than never, right?
SWMBO and I took Tumeric supplements to treat our anosmia [loss of smell] when we caught COVIID in 12/21, and so I had some laying around, and then re-started taking it after my PV diagnosis in 5/22, just because I knew the PV was in part an inflammatory condition d/t the JAK2 proliferation increasing activation of kinase pathways.
This article suggests it may do more:
Title:
Curcumin induces apoptosis in JAK2‐mutated cells by the
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ET, Joint Pain, and NAC: Seeking Alternative Solutions
