Essential Thrombocythemia: Making treatment decisions

I also agree about people not understanding chronic illness. It’s hard for them to understand it’s the way it is and we just manage and live without expectations even though we have some ups and downs

That’s a shame, my platelets range from 650 to 800 I was allergic to aspirin and clopidogrel that I was put on, resisting other drugs at moment as no t sure body will cope but agreed with haematologist (who won’t see me any more unless I have a biopsy) that if platelets go above 800 I will go back and see him. My doctor has agreed 3 monthly FBC which I monitor. I have been trying to manage symptoms with diet and homeopathy for 5 years and feel ok but I am not reducing platelets so I know at some point I will have to try other drugs.

I’m also a member of the myMPNteam.com social media for ppl with blood disorders and on there I’ve read a lot about HU, and the Argulide whatever it’s called being horribly toxic. I’m reading Pegasus is the choice if you want to heal.

You should definitely get the bone marrow biopsy so that your hematologist (and you) know exactly what you are dealing with. The results will allow your doctor to tailor your medication specifically to your situation. High platelets are nothing to play with. Good luck!

There have been a few remissions with Pegasus. No one is calling it a cure. Peg does seem to arrest disease progress, which anagrelide and hydroxyurea do not. It has side effects, notably depression, that makes it a poor choice for many elderly people.

If you are being scared off anagrelide and hydroxyurea by homeopathic practitioners, remember that they have a monetary interest in fear mongering. Doctors now tend to prescribe the lowest effective dose of chemo. The people who have most trouble with it are those who wait until their platelet counts are sky high and they have to start out taking high doses of the meds.

Hi @healedbytheblood0119, you're right to do your research about best treatments for essential thrombocythemia. Anagrelide and hydroxyurea are effective treatments, as well as Pegasus for managing ET. As for toxicity, all drugs have side effects. Even "natural" supplements can have toxicity, side effects or drug interactions. Thank goodness there are options. What may work for one person, may not for another. Not everyone experiences the same side effects.

@nohrt4me makes a good point about managing with low doses before platelets are so high that higher doses are necessary.

What treatment is your doctor recommending for you?

My Hematologist was recommending Hydroxyuria for me. He did not say what dose or how often I will take it but I have an appointment this Wednesday and will find out more.

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.

Said bc I’m 44 I could do 1 baby aspirin daily. Said there were studies where ppl took 2 baby aspirin a day, 1 every 12 hours. Said this had increased benefits and protection.

If I wanted could do the iv platelet removal thing but then all the iron lost I’ll be anemic and other issues.

Since rx drugs are especially damaging especially to the liver and kidney I’ve read taking daily milk thistle supplement repairs the liver and prevents further damage. Makes sense. Have you heard of this?

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.