This is an interesting article re reducing symptom burden/inflammation. The only supplement they focus on is N-Acetylcysteine which they believe could be a ‘promising potential therapeutic approach’ to MPN related symptom burden
ncbi.nlm.nih.gov/pubmed/310...
And is article suggests that a daily spoonful of baking soda could benefit autoimmune and rheumatoid issues.
sciencedaily.com/releases/2...
Best wishes
Paul
Hi Paul, I read something similar and have tried taking it for a week or so for my ET. It seemed to make me overwhelmingly sleepy. Apparently this is a known but uncommon side effect. I'd be interested how anyone else gets on with it if they try it.
I take daily capsule of 600mg. Think some take 1,200mg.
I’m on anti inflammatory diet so inflammation markers already low. Hence my low symptom burden could be a result of this.
There appears increasing interest in NAC so hopefully ahead of the game if it does work!
My pet theory is that we should try to keep our inflammation as low as possible. I’ve had good response to Pegasys and no side effects. Thinking side effects may be a function of inflammatory levels.
Best Paul
It does, seem to make sense that inflammation markers relate to symptom burden. I've revised my diet which has seemed to improve my fatigue and brain fog. I wish the NAC didn't make me feel so sleepy, maybe I will give it another try. Interesting article about the bicarb as my husband is in the early stages of rheumatoid arthritis at age 40. Thanks for the links!
Hi Turtles, I got rid of my daughter’s Juvenal arthritis (both ankles) and rheumatism in the eyes. We cut out omega 6 foods as much as possible, NO pork or pork fat (both are poison) for autoimmune illnesses. She ate loads of sushi, pistatios, and I put flax seed oil in all her food. The trick was imega 3 with protein together.
That's some great advice, thanks Anag! 😁Glad your daughter is better too!
😁
I see in this old post about taking N-AC. Are you still on it?
Very interesting but how would you take it and how much? The thought of it 😝
My question too
Hi Paul!
If you remember, we are on about the same diet which is keeping my inflammation level super low. I will be reducing my thyroid hormone a third time in 14 months!
Being a bit confused, I researched and found that N-Acetylcystine is a natural supplement and then again, that it is synthetic. I always thought it was synthetic. Important is that it is a precursor to glutathione, which is our body’s most powerful anti-oxidant. NAC is also present in broccoli cauliflower and asparagus! Basically, it helps our body help itself! 😁
CAUTION! Whatever we take, when we are trying to detox, we must be careful to take the supplement or detox food far away from the time of our med intake. I take Anagrelid, which has a half-life if 1.3 hours. I, therefore take my detox and antioxidant supplements at least 3.5 hours after my pill and take the next pill at least 2 hours later! So as not to detox my med. Simple, unless you’re on interferon, which I believe is a shot once a week.
I don’t really think I need NAC because I do so much other great stuff to reduce inflammation, like 1 tbsp of top grade organic salmon oil every morning or a detox bath once a week, some light bouncing on my little trampoline 5” daily to get my lymph system moving. I try to stay as natural as possible, but even natural products/ supplements interact with each other. So we must really be careful and ask a knowledgeable doctor for guidance. I like the part about NAC possibly helping to reset skin color! Hm.
pharmacytimes.com/contribut...
My CRP has been 0.02 since I’ve been on my diet and supplements and all my immune globulin is great too. Let’s all reduce inflammation! Cheers! And thanks for the info.
Well, i've finally done a bit of a trial. I took 600mg NAC for a couple of months and did not notice any particular benefit and no side effects. I went through a bad patch about a month ago and started taking 1200mg - what a magnificient difference!!! Within a week i lost most of the aches and pains from regular interferon which i suffered with daily (and didn't think it would help with any medication side effects) and very subtly noticed by body was not in as much stress and i could do things around the house that would normally leave me in agony.
I have no blood markers to verify this but i ran out of NAC a week ago, had my injection and came to the conclusion i was not going to take any more interferon until i start taking NAC again. It's amazing how we tolerate so much suffering and after the reprieve i could not handle the side effects of my regular interferon, i felt terrible! It costs me $19 a month and i'm putting it in my "must have" basket.
People with bleeding disorders or taking blood thinning medications should not take NAC, as it may slow blood clotting.
I still take it but low dose. There is an MPN trial so will keep on until the result. It could be beneficial but I’m not 100% sure
Are there specific blood test parameters you had checked for inflammation? ie C-RP, LDH, YKL-40? I think all of us should be sure to get such info. I have Hem appt this week and plan to ask for these three bloods, and maybe others you have had. I have only LDH right now.
I have heard about the planned trial. I hope to enroll. If fee13 experience is an example, it could be the higher doses are needed for a clear effect. You've most likely seen the chart here. N-AC, and the related Amino Acids, are intriguing as well as the mouse studies.
Is your symptom burden still ok? As you noted, it could be your diet alone is helping.
I don’t have any specific tests to say that the NAC has helped me but I know I have responded extremely well to interferon. Below is a lengthy link to read & applying some logic it stands to reason it would help. Generally MPN’s have higher levels of tumour necrosis factor & IL-6 plus this either hindering interferons absorption or interferon itself raising these cytokines as well (I can’t find the info), NAC can lower these. IL 6 is both anti and pro inflammatory but if chronic high levels are sustained then that’s when they need reigning in.
doi.org/10.3390/antiox10060967
Thanks for the detailed info. It seems that the 1200 dose of N-AC may have improved your tolerance of INF, which allows you to continue INF to great effect.
Here is one ref that connects IL-6 as you say:
ncbi.nlm.nih.gov/pmc/articl...
<<IL-6 cytokine levels were increased in plasma, as well as IL-6 protein levels in bone marrow stroma of MPNs, dependent on JAK2V617F mutation presence in ET and PMF patients>>
In your reference another blood disease is noted:
<<NAC has also been proposed for the treatment of patients with sickle cell anemia due to the relationship of the disease with the increase in oxidative stress>>
We should soon see an early study of N-AC and its effect on MPN markers.
My LDH is around 100 - 105 and my CRP is under 0.3. I think this is a mix of anti inflammatory diet and exercise but Pegasys has played a major role. LDH was rising, at 230, pre starting Pegasys.
I assume that, for MPN patients, LDH is effectively a marker for ‘stress’ in the marrow. Obviously a high LDH could have multiple causes other than progression but it’s something I watch closely. I figure that whilst my LDH stays low I don’t need another BMB.
A recent research note suggested that high CRP is also a progression marker.
Finally I try to get the occasional Myeloid Panel test for any new mutations. I have JAK2 and TET2 and understand that the more mutations you have (above one), the more at risk you are of developing new mutations
clinicaltrials.gov/ct2/show...
Here we go! Dr Silver referred to NAC recently as a supplement that might enhance Pegasys efficacy. I’ll post later
journals.lww.com/hemasphere...
Dr Silver
This is a good new summary report. I plan to try to start Besremi soon. My Dr suggested Rux, ( I would consider small dose as combo to INF) but could be N-AC is a safer easier cheaper option for combo therapy. I plan to ask. I've been following Dr. Fleischman's N-AC trial, seems almost ready. She considers it possible just that aspirin + N-AC might even affect the clone, but this study is not to look for that
Some items I note on Dr Silver report:
<<patients with advanced MPN-disease and a large tumor burden, for example, patients with myelofibrosis and massive splenomegaly, do not tolerate rIFNα well, owing to its side effects...This increase may be temporary and may decline in concert with rIFNα-mediated reduction in tumor burden.>>
<<There are reports that patients with TET2-mutations have impaired response to treatment with rIFNα>>
<<...earlier rIFNα is started in PV and related neoplasms, the more rapid the decline in the JAK2V617F allele burden. This results in a shorter treatment period in order to obtain a major molecular remission>>
<<The encouraging results of combining rIFNα with ruxolitinib may introduce combination studies with currently available and inexpensive drugs, such as statins, and N-acetylcysteine, which all have shown potent anti-inflammatory, antithrombotic, and anticancer capabilities.>>
Allele Burden Question
MPN Symptom Uncovered
Alle burden ratio
Jak2 burden
