JAK2 Mutation - Effects and Questions

@ettap
Have you had a bone marrow biopsy? I understand the labs and the bone marrow biopsy to diagnose?

Yes, but I itch random times of the day. It’s really frustrating. I find antihistamines help but don’t stop it all. I haven’t found any creams that work. Like you, searching for an answer.

Yes, unfortunately pruritus (itchy skin) is a common side effect. I have it as well and continuing to look for ways to lessen it. I get severe flair ups from contact with water, showering, even getting caught in the rain. Just started taking melatonin at night with 1/2 Benadryl which helps sleeping (recommended by nurse at hematologist). I also found regular application of Trader Joe’s coconut body butter helps. If anyone else has other suggestions I’m open to hearing as well.
Hope you find relief!

Does anyone else have severe itching and tingling all over really bad at night
I have poly Vera and jak2 and am on hydroxy with monitored bloods

Thanks Cidy7. My platelets have been higher than normal since 2021. My lab work history has been 528, 642,730, 677,730,713,786 ,640, 593 and lately 848. Early this year, I started getting endless fatigue and tiredness and that is when the hematologist put me on HU.
Also i have other medical conditions(chronic kidney disease, diabetes and hypertension) and all these pose a risk for cardiovascular risk and this may have contributed to my being put on HU

I'm Jak2 positive also verified by 2 separate labs..I wasn't happy with my first hematologist not because he didn't know what he was doing but because he said straight out on 2 separate occasions don't ask me those questions? Enough, I went to MDAnderson where I was treated for breast cancer years ago. I also had a bone marrow biopsy at MDA..I'm 75 diagnosed 18 months ago on hydrox and a baby asa,,Because of my age I'm considered high risk. I had phlebotomy (blood letting) twice in the early days but the hydrox has been controlling my symptoms. I was told my blood would be discarded and I can't donate blood for obvious reasons. You don't mention which myloproliferative neoplasm you have but if your lab work is normal then I understand why...Something led your doctor to do the Jak2 lab test,(not a typical lab test) was it your two clotting events? Clotting events are typical of all the MF neoplasms that's why baby asa is given and told to drink lots of water. to thin the blood. have you asked your Hematologist these questions? It's strange you've had 2 clotting events, JAK2 positive twice with all normal lab work and testing..I understand your not a worrier however clotting events can be life threatening.... I would get down in the weeds and figure this out with your hematologist Good Luck....

What changed in your symptoms/lab values to initiate reasons to start HX?

Thank you so much for your reply and info. Yes, I'm convinced the baby aspirin 'two-step' approach is needed. Still baffled by not having been told this sooner by that former doc, very disturbing. Thank you again:)

Nonsteroidal anti-inflammatory drugs (NSAIDs) can inhibit platelet function and aggregation, which can increase bleeding times. NSAIDs do this by blocking the formation of thromboxane A2, a platelet-activating eicosanoid, by inhibiting platelet cyclooxygenase (COX). Aspirin irreversibly acetylates COX, while nonaspirin NSAIDs reversibly block it. So the small amount of aspirin to keep the platelets from being sticky and Tylenol if you have pain. Ibuprofen can cause bleeding problems. Also, tell your hematologist ALL medicines and supplements you are taking...your pharmacist can tell you about adverse reactions to medicine combinations, but your specialist needs to know everything, as well.

I take HU and ibuprofen fairly frequently. I will switch to Tylenol and ask the pharmacist next time I am in there. Thanks for the heads up.