Essential Thrombocythemia treatment with Besremi

I’ve had ET for over 30 years now and have done quite well just on hydroxyurea. I can only take aspirin about once or twice a week. Otherwise I bleed too easily. My hematologist said I should start Besremi injections.
Has anybody tried this for their ET or potential PV treatment? I have to do blood letting until I start the injections. My hematocrit is 48. My platelets are 470. My white count is 11. These are the highest my numbers have been. Praying for life extension. Leene

I meant Besremi injections.. sorry could not remember the spelling. Is anyone doing this for either E.T. or P.V?

ET-CALR x 17 years, on HU for 6, age 70. Did yr doc say why he wants you to go on Besremi? Lots of info on here for the newly diagnosed, but harder to find info for us long-timers. Hope you are feeling OK. Thanks!

Hi @leene808 I want to extend my welcome to Connect. Having no experience with these particular meds, I can’t really add to the reply by @nohrt4me. But I can appreciate the anxiety of starting a new medication after having success with the HU for so many years.

I did do a quick search of all the members who’ve mentioned Besremi. Not sure how many are long time users, but you’re welcome to scroll through the results to look for any conversations that might be relevant for you. ☺️ Click the link to see the results.
https://connect.mayoclinic.org/search/?search=Besremi+
You mentioned needing to reduce your blood volume until you start the new med. Will this be your first phlebotomy? If so, I found this for you:

~Your tips as I prepare for first phlebotomy
https://connect.mayoclinic.org/discussion/feb-9-first-phlebolotomy-iron-is-low/
Will you keep us posted on your progress, please? ☺️

I have now had 7 Besremi injections, number 8 coming up on Wednesday.
The side effects have been minimal: I now know to cancel Pilates the day after as I find the movement makes me a bit nauseous. Otherwise continual dry mouth, no big deal, I just drink a lot of water which probably is a good thing anyway.
I find that taking paracetamol (acetaminophen) after the injection, before bed, helps a lot.

I have ET with JAK2.
Please see my post: https://connect.mayoclinic.org/discussion/essential-thrombocythemia-treatment-with-besremi/?pg=3#comment-1321409

I am happy to answer any questions you may have.

He just looked at my last set of labs and handed me the med sheet - he said one more time letting out blood then switch to this 🤔 im reading up on it and seems its the right way to go at this point. I have super fatigue after the blood leading not looking forward to doing that again thanks for the info and the tips on using besremi will try it next month🙏

I saw elsewhere that you have PV. If it reduces the frequency of plateletpheresis sounds like a good plan!

I am looking at the cost for Besremi and WHOA! I may not be able to afford the copay.. trying to get the info from my insurance company. Any tips on how to pay for this stuff? This makes me very sad! Its the cost of being in America I guess. Sucks! may have to reconsider this plan or sell my house.

My dr contacted the specialty pharmacy in the town next to us and I was given a grant. The grant paid for my injections and that met the catastrophic deductible on my insurance so now I get it free of charge. My insurance pays 100%. They ship me 2 injections at a time and the cost would be $16,939.01. Wishing you the best