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Jak 2 periodic testing
I am female 78 with PV . Was on HU for a yr. My numbers nearly perfect with an occasional phleb. But my JAK 2 mutation has gone from 15% to 68% in 6 years. So I am now on Besremi for 3 months. My biggest side effect is digestive. Chronic diarrhea. And feeling woozy in the morning. My hope is to bring down the % of burden in my bone marrow. Has anyone done more than one blood test during the course of the disease? If so, made any changes?
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This is a great question! My oncologist never suggested doing another JAK2 test? It’ll be four years since my PV JAK2 diagnosis andUM on HU. It does the job, with Phelbotomy about every eight weeks. I’m a 60 year old female. I’ve never done a bone biopsy. Have you? Please keep us posted!
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2 ReactionsI was first diagnosed with PV five years ago and a JAK2 test was part of that diagnosis.
But my Oncologist has never mentioned a need for another test for that since. We are managing my #’s by periodically changing the dosage. But a 4 day a week program of 500mg of HU seems to have stabilized them. I am now on quarterly CBC blood tests. Earlier they were monthly. Best Wishes for you with yours.
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1 Reaction76 year old with PV, on 500mg HU daily. JAK2 tested 2022 (diagnosis) was 52%. In 2025 I insisted on a recheck. JAK2 was at 40%. Bloodwork fairly stable with phlebotomy once a year if hct goes to 68ish. Insurance gives a hard time paying for retest as the only billing code is as a diagnostic (ICD10 code D47.3) and they only want it done once. I felt it was important so paid for it.
The diarrhea is not good. Hope your doctor acts to address that asap. Most over the counter fiber therapies are full of chemicals. NuSyllium Organic Psyllium is very clean.
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2 ReactionsI am a 70 year old male with PV diagnosed in 2022; 500 mg hydroxyurea daily - no need for phlebotomy in 3 years. Had an initial JAK-2 confirmation but never had a BMB (dx indicates this is not necessary unless current state changes and/or symptoms surface). Careful with diet and getting exercise. Blood checked ~every 4 months.
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2 ReactionsGreat question! I asked my dr about progression and re-checking the burden and did not get a direct answer. That will be another question though for my next visit. I know that HU is keeping my platelet count in line but i have no idea what is going on at the source/bone marrow.
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2 ReactionsI get a Jak2 test twice a year. So far they have been 91, 73 and 77. I have been on Besremi for a year and a half. After I get my Jak2 test in December, if there is no significant decline, my hematologist and I will see if we can either add Jakafi to the Besremi, or significantly increase my dose of Besremi. Both of these strategies have been shown to reduce the Jak 2 faster. Studies have shown that ideally the Jak2 should be under 50% for lower risks of complications.
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1 Reaction@dewz13 I would love to hear what he has to say.
Exactly! Love to know the outcome!
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Great info! Interesting that Jakafi could be added in if Besremi not doing
it alone. I’ll bring that up fir sure at my next meeting.
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There are several articles describing a study (COMBI study) combining Besremi and Jakafi.
Here is one of them:
https://www.ajmc.com/view/study-summary-combi-study