Jak2 V617F.: Hello friends heard loads about the... - MPN Voice

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Jak2 V617F.

12 Replies

Hello friends heard loads about the use of Acetyclysteine to help put out the flames of inflammation. I have PV,and thrombosithemia and currently taking hydroxy, wafrin and indepamide.

lm preparing a list of symptoms for a new consultant, apart from the many other issues of MPN l would like to reduce inflammation without pharmaceuticals. I'm wondering if there are others also on Wafrin Hydroxy mix , and taking Acetyclysteine 🤔

12 Replies
Swede profile image
Swede

Hi, I started with thrombocythaemia and now have MF. I have taken Hydroxycarbamide all the time, but I take Clopidogrel and not Warfarin. I have never heard that someone used Acetylcysteine for an MPN as it is mainly used for Cystic fibrosis and some other lungconditions (or overdose of paracetamol). Have you for some sources for your information?

in reply to Swede

Hi yes l have researched it and there are pepole on this site who use it to help with inflamation, but it also has many uses besides the one you mention.Thank you Adiewon

hunter5582 profile image
hunter5582

I believe you are referring to N-Acetylcysteine, which is recommended by some of the docs looking onto the role of inflammation in MPNs. I am using a similar downstream compound from NAC called L-Glutathione. It was recommended by my Integrative Medicine doc. I also use Curcumin. The Curcumin has been particularly helpful in dealing with inflammation. It works better than any NSAID I ever took.

Do be aware that many anti-inflammatory agents are also to some degree blood thinning. There is potential to potentiate Warfarin blood thinning effects. I did check with this resource and it did not show an interaction between Warfarin and NAC or Curcumin.

reference.medscape.com/drug...

It is best to consult with a knowledgeable medical provider when considering supplements. This is why I consult with an Integrative Medicine doctor. Many other docs, including hematologists, are not knowledgeable about supplements and interactions. They are quite understandably cautious when asked about them,

Hope you find relief from the inflammatory issues.

in reply to hunter5582

Hi Hunter thank you for info lm talking with my consultant on Thursday and hopefully he will be on board about the use of N-acetylcysteine or L-glutathione to manage the constant burn of inflammation in my entire bodyAdiewon

hunter5582 profile image
hunter5582

The most important person to be on-board is yourself. You are the best judge of how the inflammation is affecting your quality of life. It is your goals and risk tolerance that should drive this decision. Hopefully, your current doc is up-to-date on the research being done by Angela Fleischman and others on inflammation management.

I would note that supplements are not as well regulated as traditional Western medicines. Some of them are useless and unreliable. It is important to find a reliable supplier. This is another reason I consult with an Integrative Medicine doc.

All the best.

christiev profile image
christiev in reply to hunter5582

Hello HunterInterested to know which formulation of curcumin supplement you’ve found works ebest for you. I’m aware that the Meriva formulation has been studied a fair bit and also the C3 with peperine. But there are a few more now emerging it seems that also claim greater bioavailability and absorption, I guess newer ones are yet to have the peer reviews standards we’d like…?

hunter5582 profile image
hunter5582 in reply to christiev

I am using the formulation recommended by my Integrative Medicine doc - CurcuWIN. It is found in various brands, including the Spring Valley brand that I am able to buy at Walmart. There are certainly other formulations that work. It is a good idea to have a medical professional familiar with supplements to consult with.

in reply to hunter5582

Hello Hunter thanks for reminding me that lm my own best advocate. I will referr to Angela Fleischman's research and also press my point that after after 2 years of being on Hydroxy,Venous Section side effects of Hydroxy have gotten worse even though Warfrin platlet count, INR and hematocrit are all maintained within range. I have to say that so far in the eyes of most hematologist lve met with the idea of risk tolerance and my personal health goals hold very little sway ...Adiewon

hunter5582 profile image
hunter5582 in reply to

At the risk of sounding like a broken record, it is always the patient's goals and risk tolerance that drive treatment decisions. The physician's job is to consult with you and advise you how to best achieve your goals while respecting your wishes regarding which risks you prefer to take - or not. This is particularly important when the patient does experience adverse effects. It is up to the patient to decide what is acceptable.

My suggestion would be to tell the hematologist that you intend to pursue treating systemic inflammation. Your plan is to use NAC unless the doctor has a better suggestion. You might also inquire as to whether the provider is aware of a particularly good formulation.

All the best my friend.

in reply to hunter5582

Morning Hunter in my experience the uses of broken records is manfold. In this case helping me to hear clearly and understand the key theme and points being made,important to me . 👍 thank you friend just one thing, lm not in a postion right now to consult a functional medicine practitioner so l guess NAC intervention may be a bit hit and miss initialey.

Adiewon 🙏

hunter5582 profile image
hunter5582 in reply to

I buy the NAC or L-Glutathione directly from my Functional Med doc. When they are out, I order from Fullscript.com (in the USA) . (N-Acetyl Cysteine - Ortho Molecular Products). In the UK, I do believe that there are Naturopaths available for consultation. If not an option, my suggestion would be to go to one of the stores that specialize in higher quality medical-grade supplements. Or alternatively, speak to your pharmacist about how to go about obtaining a high quality NAC. There is no point to paying good money for an unreliable product.

All the best my friend.

in reply to hunter5582

Hi Hunter thank you so much for the list of resources .I will look into a one off consultation with Naturopath it sounds like an option and indeed a real good investment.

Thank you again

Adiewon

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