Anyone living with Essential Thrombocythemia with JAK2?

@loribmt
Thanks for sharing this news, Lori! To have another approved treatment option for ET after 30 years has to be some good news, especially for those for whom their current treatment isn't working.

I noticed in the study that the participants were chosen from those for whom hydroxyurea was no longer working or tolerated. The linked articles and the links in them were very informative.

Update on my progress with ET and treatment with Hydrea and low-dose coated aspirin:
(You know I type fast and am too wordy, LOL.)

I started treatment early this year when my platelet count got to 614k, with 500mg of Hydrea each day along with low-dose aspirin which I was already taking. The aspirin has been increased to 2 times a day. As we know, aspirin makes the platelets more slippery and less likely to form undesired clots, thereby helping prevent strokes and heart attacks.

The Hydrea worked and quickly got my platelet count back into the normal range, without lowering my red and white cell counts too much, although those did go down too (which wasn't desired as they had been fine before). I didn't really have any significant side effects that I could tell for several months. Then my feet began to tingle, feeling as though they were asleep. This fairly quickly spread to my calves, hands, and forearms.

At my last 3-month check-up with my oncologist's PA (my doctor was in Greece), my platelet count was down in the lower 200,000's, with my white count at the very low end of normal and my red count just a hair below normal. Therefore, I expressed interest in possibly lowering my Hydrea dose a little to improve my red and white cell counts.

I also told the PA about the tingling in my feet and hands, and she was immediately concerned about the neuropathy. I told her it wasn't painful, just tingly which bothered me more at night. She said neuropathy can be a side effect of the Hydrea, but that it normally took far longer than I had been on the med, and we needed to try to do something about it before it got worse. She suggested leaving the Hydrea off on Saturdays and Sundays to see if that would help, and hopefully not make my platelet count go up too much. I was happy to hear this suggestion and that's what I'm now doing! (500mg M-F, none on S-S.) I go back for my 3-month checkup in October.

The neuropathy is almost gone, although occasionally my toes and fingers tingle a little. Also, I had been losing more hair than is normal for me, and my eyelashes are thinner. I had a good head of hair to start, but not any eyelashes to spare! I know I am blessed to only have these minor side effects, if the neuropathy can be controlled. She said although my red and white counts are no longer perfect, many with ET would be thrilled with my numbers. I know I am extremely blessed so far. She was much more concerned about the beginning neuropathy.

The only other problem I've had is one that I doubt was related to either my ET or Hydrea. Back in March I was sick for about a week; stayed in bed and slept a lot, which is highly unusual for me. I'm never sick! I went to my PCP and my sodium level was low; first time ever. He said he thought I probably also had some kind of viral infection, but I tested negative for Covid, flu A & B, and RSV. I got over it and have felt fine since. I did learn that low sodium can kick my rear!

I have also begun taking an OTC vitamin B12 supplement, under the tongue. I had read that the folic acid supplement I take could have given a false test result for B12. (I forgot to tell my doctor I was taking folic acid.) I mentioned the folic acid supplement to the PA and that I was taking it to help protect my red blood cells. (Info on hydroxyurea usually recommends this.) She said it is prescribed when HU is taken for sickle cell disease and would not hurt for me to take it, but it wouldn't "fix" my red blood cells. My red cells are also larger and misshapen (I forget the name, but it's in the blood lab work), as is common when taking HU. I am choosing to continue taking the folic acid.

I'm hoping my platelet count is still within normal at my next checkup and that the neuropathy stays away, whether it was caused by the Hydrea or by a hidden B12 deficiency. I still have hair and a few eyelashes so far! My nails are more brittle but that's minor too. I hope I can stay on the Hydrea only 5 times a week instead of 7, but we'll see. Regardless, I'm enjoying life in the meanwhile. I'm now 79.

I'll try to remember to update after my checkup in October.

Best wishes and prayers for a resolution for those who are having much worse side effects from their meds and/or ET, and trouble getting their platelet counts down. ET and its treatments are apparently somewhat unpredictable. Hang in there, as things do change.

@loribmt sorry for delay computer doesn't always show messages .
Started taking hydroxyurea in 2020 and dose has been increased gradually to two 500 mgs daily.
Still jogging along doing the best that I cam manage, didn't help sister passed with Cancer of the Gail bladder out of the blue. My two anchor points Queen Elizabeth and my sister had always been there now gone.

@leene808 Putting it my list of things to ask at my annual visit this fall! How long have you taken HU?

@loribmt it sounds like the approval is pretty broad? Maybe more people will be able to access it? Or do patients have to fail on HU first?

@jodyjazz
As long as my body doesn't betray to too badly, I try to think of my age as a mind set. I know this sounds like baby-boomer propaganda---but I think my body believes what my head says--to a point of course. I do not have the track record of the 3 miles walker, but I try.

@jodyjazz I have the same questions, mine were never over 500 (yet), so I toy with the idea that I don't need the HU. But when I went to evey other day dose mine started creeping up.

Hi @eloise999 You posed a great question as to whether patients with ET needed to fail on HU first before they can receive Besremi. Apparently that’s not the case. After a little more digging this is what I found this morning regarding eligibility. It appears there is no requirement limit to who may receive the drug.

This quote is from Curetoday.com (link to full article below)
“The approval, announced by PharmaEssentia USA Corporation, makes BESREMi the first new FDA-approved treatment for essential thrombocythemia in nearly 30 years. >The approval applies to adults with ET regardless of their genetic profile or disease status, including people who have been newly diagnosed and have not previously received cytoreductive therapy.”

From Curetoday.com:
https://www.curetoday.com/view/fda-approves-besremi-for-essential-thrombocythemia-expanding-treatment-options
A few more links with information on Besremi’s approval Aug 31, 2026.
FDA;
https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-essential-thrombocythemia
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From Besremi.com
https://besremi.com/et/
This drug has the potential to change course of the disease by reducing the JAK2 mutated cells. But it may not be for everyone and will take consideration from both patients and doctors to make the right decision on treatment plans. It’s certainly encouraging though.

@cec2 From looking into more articles on the Besremi approval for ET, while the studies involved participant with whom HU was no longer an option, I couldn’t find anything that limited the drug to patients who had previously taken HU and failed.
Here’s what I found and posted in a reply to @eloise999 https://connect.mayoclinic.org/comment/1661218/

If you find anything to the contrary, please keep us posted. I’m sure there will be more feedback as patients/members check in with their hematologists. If HU has been working successfully for some patients there may not be the need to switch treatments.

@nohrt4me 35 years