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@healedbytheblood0119

Hi,
Even if it’s not a cure for everyone just knowing it will stop the progression to even worse conditions seems worth it.

Not being scared off by homeopaths but they were real ppl who took one or both those drugs.

The side effects they spoke of even on the 1 pill 500mg a day were harsh. Skin and other cancers, hair and nails falling out, vertigo, etc.

The Anag drug many ppl said they experienced, and their Hemas and MPN Specialists said they likely will and their other patients have gone into A fib and had heart attacks.

The thing is many ppl including myself aren’t waiting but their Hema is saying can take baby aspirin until platelets count reach a million or more, maybe even forever. Said doesn’t matter how high the count but if blood is thinned.

Also the Hemas don’t admit that animal products and vitamins supplements of B12, K, C, D all raise platelets in food and vitamin form. So stressful.

I’ve witnessed this personally and am now having to go back vegan bc of it.
Was 625 platelet count vegan (likely for years undiagnosed) then was told animal products could help so tried and as of Dec 20 the count was 825. Only 3mo after switching to non vegan.

I know it’s even higher since then and don’t go back for blood till March 20.
But changing diet back and stopping multi.

I have yet to meet anyone who has a Hema who spend enough time with them in the appointment. It’s sad but that’s how most mainstream doctors are.

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Replies to "Hi, Even if it’s not a cure for everyone just knowing it will stop the progression..."

The only patients I've whose docs allowed them to run platelet levels up to 1,000 were young ET-CALR patients. CALR patients like me are lower risk for clots than JAK2s. However, past age 60 or 65, everybody's considered at least moderate risk.

If I were younger and had great insurance, I would certainly try Pegasus!

However, I am 70 and have only been on HU for five years. I should be able to take it for another 15 years without problems, and I don't expect to live nearly that long due to other issues.

I totally agree that docs don't spend enough time with ET patients, and most of them don't hand out pamphlets or links to reputable Web sites. That's really puzzling now that there are so many places to get credible info. Then they complain when patients Google info.

Lack of info is among the worst "side effects" of ET.

I have been taking hydrea for ET for 12 years and have never heard of supplements , dairy, etc increasing platelet counts I have a friend who is vegan and I do try to follow some of those guidelines. I will explore that more. Thanks!