Essential Thrombocythemia: Making treatment decisions

Hi@lehall125,

I, like you, have CALR mutation and do not care to take Hydrea. I also have no symptoms and feel that I am healthy taking no meds. I do check my BP each morning and it is normal at home, but my systolic pressure spikes at doctor appointments and my primary doc said I have White Coat syndrome and just to take my BP at home daily in the morning like I am doing to make sure it stays normal which it has. I exercise daily, weigh 107 which I have weighed for 30 plus years, and do stretching and yoga often so I am very flexible with no pains. I am 66. I do have high platelets so I take low dose aspirin daily but was told not to while I had my facial surgery recently for another skin cancer. I am tapering back up to daily as I did notice my facial wound had a small area bleed when I took the aspirin right after the surgery. I imagine if I did take Hydrea, I would have even more skin cancers and I just do not care to have that happen.
Thanks for sharing.
Happy New Year 2026!

@ann7449 I took HU for 8 1/2 years without any side effects at all and it controlled the platelets very well. Then, suddenly I developed a painful ulcer on my ankle that would not heal until I stopped the HU. I started Besrimi about six months ago. It has reduced my platelets to around 300, with no side effects so far.

That's great to hear that the besremi is working for you. My platelet count was holding in the mid 400's until the last blood work where it jumped to 570. There had been a lot of stress so hopefully it can be attributed to that and will drop back down soon

@wlm7615 This is a pretty well-known side effect for some people who take HU over a period of years. Happened to my dad about 25 years ago. I am not sure why "do you have any sores on your feet, ankles, or legs" is not a standard question at yearly check-ups. Yet some docs seem clueless about it still. Also not sure why there isn't much research that could explain who might be at more risk for ulcers.

@nohrt4me my hematologist told me that he didn’t think HU was causing the ulcer because I was on a low dosage and he said it was a very rare side effect. He was opposed to me, stopping HU nevertheless, and desperation, after seven or eight months of no healing despite every effort, I stopped it on my own, and immediately the ulcer began to heal. Thankfully, it is a rare side effect, but one that does occur. Prior to the ulcer, I had no side effects whatsoever and the medication worked well to control the platelets.

@wlm7615 I have heard several patients report this. None of them healed up until they stopped the HU. It would set off alarm bells if a doc waved away non-healing ulcers and wanted me to stay on the meds. Glad you were switched to Besremi. In the "olden days," patients were sometimes switched to anagrelide, which works well for some.

When a doctor says "No, that has nothing to do with ET or HU," what it often means is the doctor hasn't done his or her research.

Doctors seem unable to utter the words "I don't know."

It seems to me that those living with ET can often be a better source of information.

@janemc YES! It would be so great if docs could say "I don't know" and then tried switching meds or referring you to an expert.

wlm7615's doc just dismissed HU as a cause because it's not a common side effect, which leaves the patient either living with an ever-worsening ulcer or experimenting on his own. That's not the care any of us deserves.

@wlm7615 I took HU for 10 years and had the same thing happen 6 months ago when my Doc bumped me to 2000mg a day. I had been tolerating 1500mg but my count went up which caused her increase the dosage. I’m now going to give anagrelide a try.

I was on HU for about nine years, with good control of platelets, until a painful ulcer suddenly appeared on my ankle. The ulcer would not heal until the HU was stopped. I switched to Besrimi about six months ago (150mcg 2x/mo), and so far it is controlling the platelet count very well, with no side effects.