High Platelets and N-Acetylcysteine trial

[mbr8076]

Greetings all,

I had my 6 month visit with my MPN specialist and the blood work prior to the visit.

Re: High Platelets

My platelets have been rising regularly for the past 4 years. In 2019 following one year of Hydrea treatment @ 500 mg daily and another 500 mg on M-W-F my platelets went down to 397 from 1 million when diagnosed in 2018. In 2020 platelets were 463, 2021 were 479 and 464, 2022 were 486 and 558 and now in 2023 they are 649. The Dr is not concerned about the rise but I cannot get it out of my head because my ET Jak2+ diagnosis was following a mild heart attack when my platelets were at a million and the cardiologist following diagnosis felt the heart attach was probably due to a blood clot from the viscous state of my blood. My MPN specialist does not feel I need to increase Hydrea of which I would rather not increase the chemo medication. I just wonder if I should switch to another type of treatment.

Re: N-Acetlycysteine trial

I heard about the use of N-Acetylcysteine to combat inflammation on this site. I asked the Dr. about it and she is currently doing a trial on testing different amounts and its effects on inflammation in MPN's.

I am pondering entering the trial. Has anyone here been using this supplement and at what dosage? Did you have any side affects and has it helped with your inflammation? I asked for her to do a CRP test to test systemic inflammation and surprisingly it came out low at .2mg/DL on 5/8/23; in 2012 I had a Cardio-CRP test and it was @ 9.3 which is very high. I heard there are two CRP tests and perhaps I had two different tests done:/

Thank you all for your patience in my long post,

Marybeth

[hunter5582]

The worry about the rise in platelets is understandable. In determining dosing, there is always a risk/benefit calculation to be made. There is no linear relationship between the number of platelets and risk of thrombosis. Platelet comprise less than 1% of your total blood volume. Thrombocytosis does not cause hyperviscosity, erythrocytosis does. RBCs comprise nearly 50% of total blood volume. That is why HCT is used to set a treatment goal for PV. there is a direct correlation to risk of thrombosis when HVT > 45% males, HCT > 42/43% for females.

Even with the rise in PLT, you have still achieved a significant reduction in the number of platelets. There is thinking that it is actually the delta (degree of change) that matters more than the absolute number of PLTs. Controlling how the platelets behave is the key to preventing thrombosis. Using aspirin as antiplatelet therapy along with the HU will reduce risk of thrombosis and microvascular symptoms. Reducing the number of platelets will also reduce your risk of hemorrhage. Note that there is an increased risk of hemorrhage when PLTs are too high.

I have used both NAC and the related L-Glutathione to help control inflammation. I currently take 250mg of L-Glutathione under the direction of my Integrative Medicine doc. My CRP has never been elevated, but I have shown elevations in cortisol and IL-10. There are a number of inflammatory pathways and markers. Inflammation can present in different ways. The most important inflammation marker for me is osteoarthritis and tendonitis pain. This is subjective but a very important functional marker. I have had the most overt success with curcumin to control the inflammation/pain related to the joint/hand/foot pain.

Wishing you all the best as you move forward.

[mbr8076 in reply to hunter5582]

Thank you, Hunter, for the very thorough reply.

I have taken 81 mg aspirin since the heart attack 5 years ago and continue to take along with the Hydrea. So, if the degree of change jumped a couple hundred then it would be a concern:/ I understand that when the count gets to over a million there is a concern for hemorrhage.

I am curious, do you follow a Mediterranean way of eating and if so has it helped you? Also, have you found going gluten free helps with inflammation? I have tried a way of eating in the past that is gluten, dairy, grain and legume free and my joints did feel better but it is very hard to sustain and was not patient enough to re introduce singly to see which one of those was most inflammatory to me:/

[hunter5582 in reply to mbr8076]

My platelets used to cycle by as much as 200K (500s to 700s) between different labs when not on cytoreductive therapy. When I was having reactive thombocytosis, they could go as high as the 900s. PLTs are more stable now while on Besremi, with variance in a more narrow range (294-409). I do not get concerned about this level of variance since it is normal to vary by as much as 100K in response to what is going on in the body.

It is possible to experience a more subtle increased hemorrhage risk at levels lower than 1 million. I used to experience increased bleeding/bruising when my PLT were near 800. The highest level of risk is for Acquired von Willebrand Disease, which usually occurs at levels well above 1 million, but is known to occur at lower levels. Your MPN doc can best advise you on this.

I would not want to hazard a guess about the level of increased thrombocytosis you are experiencing. This would require an assessment of your overall health issues and unique MPN profile. Hopefully your doctor is a MPN Specialist who can give the best assessment of your risk profile.

When I had a concern about a significant increase in thrombocytosis (+200K) we rechecked my variant allele frequency (allele burden). It had not increased to a significant degree. The conclusion was that the increased thrombocytosis was reactive, due to phlebotomy-induced iron deficiency.

An anti-inflammatory diet can be helpful. There is active research underway on this topic. I do follow a mostly Mediterranean style diet. Heavy on plant-based nutrition. Lots of flavonoids and antioxidants. I also limit exposure to contaminants in the foodstream - pesticides, hormones, BPAs, xenoestrogens, carcinogens, etc.

You may find this presentation of interest.

youtube.com/watch?v=Dh0H418...(Not working as expected?)