High platelet count

[Grouchygrady]

I have a high platelet count as well and I’m 67. It’s been high for about 25 years, has been as high as 1760, I refuse to take the pharmaceutical drugs. Do you have any updates on your platelet count and what you’ve done to bring it down? Thanks Ken

[hunter5582]

There really is not much you can do to reduce thrombocytosis "naturally." You might see some reduction by effectively reducing inflammation but not enough to deal with PLT over 1 million. At the level you are at there is a significant risk of hemorrhage, including development of Acquired von Willebrand Disease.

I have done quite well on the interferons. Pegasys then Besremi. these meds were much more effective and easier for me to tolerate than hydroxyurea. You may want to review all of the current treatment options and do a risk/benefit analysis of each. Hydroxyurea, Pegasys, Anagrelide, Jakafi, and in clinical trials - Besremi, Bomedemstat.

I would be sure to have an updated von Willebrand Panel if you have not already done so. This should include prothrombin times as well. There are circumstances where aspirin could be an issue that need to be assessed.

Hope you find a suitable treatment plan.

[DottyDaisy]

Hi Ken, good to hear from you.

I was diagnosed 3 years ago, aged 77, and was only offered Hydroxycarbamide, which, to the astonishment of the haemo, I refused. For 2 years, platelets ranged from 1000 to 1400k. Worst during the stress of the first lockdown, living in a difficult situation.

My only symptoms have always been FFF - fatigued, feeble and fragile - plus possibly my terrible balance, which I first noticed about 12 years ago around the time I became aware of the extreme tireness which I attributed to getting older and drinking too much Côte du Rhône. I did try cutting out the wine for 3 years but it didn't make any difference. We are currently trying to eliminate non-MPN related causes for the balance problems.

Apart from relieving the stress by moving to a delightful market town, 100 miles west of the London area, nothing really changed my platelet counts. When the local haemo couldn't get me to take hydroxy either, he tried to push Clopidogrel.

Since I have no history of anything heart or clot-related, and would have been otherwise perfectly fit and healthy were it not for severe osteoarthritis, I really annoyed him by refusing that too.

I did improve my lifestyle by transitioning from mostly vegetarian to 100% vegan, no refined sugar and very few processed carbs. And by returning to growing organic vegetables on raised beds in my little country garden.

Whilst scarcely affecting the platelets, I would very much like to think this is why I don't get any symptoms. Nor side effects, now that have reluctantly been taking Peg, as I needed my platelets in normal range in order to get my hip replacement.

Would love to hear what you have been doing about your platelets as I now have that hip and would really like to reduce, if not stop the Peg.

Warm regards, Daisy



[william-Indo]

the only option you have to reduce the Platelet is venesection.

[hunter5582 in reply to william-Indo]

The specific type of blood letting to reduce platelet levels is plateletpheresis. This is where they take the blood out, remove platelets, then return to remaining blood. A regular venesection could actually increase platelet levels due to reactive thombocytosis.

[Ovidess]

Questioning use of pharmaceutical drugs, in my case...

I am aligned with Dotty and Grouchy in that, given what I know so far (just diagnosed with ET a month or so back), I am aghast that I might "have" to take medicine that has plenty of side effects and could lead to the same cancer that high platelets could lead to. I found I had high platelets way back in my early 30's (now 64) but doctors then did not really know what to make of it. I always thought my visual migraines might be due to the platelets but most docs say that is not so. My platelets for decades rose and fell between 500 and 750. This year they rose to 823 so my MD sent me to hema/oncology and after many blood tests they said I had the JAK2 mutation and now I must have the bone marrow biopsy for better diagnosis and a baseline, since the condition could worsen. The young doctor said he could not understand why I never had blood clots, etc in all these decades, which sadly now I wonder about too. Dotty, I've been vegetarian since eating the food in a London residence hall when I was 19! In the past few years I've gone mainly vegan as that is what my daughter and her dad prefer. At any rate, one wonders about what OTHER mutation or condition I might have that counteracts the platelets or makes them worse. I am seeing an acupuncturist/Chinese herbalist (began before diagnosis to deal with sleep, digestive and thyroid nodule problems that rose to the fore during the first Covid years). She is awaiting more Western diagnostic work before researching what Chinese medicine could do for me IF I refuse the meds. (Note: I do fear clotting and strokes, but my heart is doing very well and I don't have other signs of ET.) I also refused osteoporosis drugs because of pretty rare side effects aligning with problems I already have, so I will be a thorn in the paw of the cancer doctors, I'm afraid. Trying to learn a lot from all of you and think outside the box. Wishing all here health and peace of mind, those wonderful commodities.

[JOY2THEWORLD49]

hi

A friend has his blood siffoned off regularly. It is a condition.

It happens in men and the stiory goes that they should also have periods or give blood regularly.

cheri JOY. 73. (NZ)

[Phantasia]

That's a very high platelet count. Do you know if you're JAK2 positive? Do you take low dose aspirin daily?

In Australia the medication protocol for those over 60 with ET is aspirin only provided there is no history of thrombosis and the patient is JAK2 negative but with platelets that high aspirin would not be recommended.

Personally I wouldn't recommend Hydroxyurea but I had an adverse reaction and it didn't really bring my platelets down much anyway.

Whatever you decide I wish you the best.

[Chinchin777]

thank you all for the info