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MGUS with Polycythemia Vera (PV)
Had a bone marrow biopsy done in 2017 and was diagnosed with MGUS. Additional BMBs in 2018 & 2019 showed a slow progression of my numbers. January of 2022 all my blood cell counts and hematocrit became elevated and have continued since. JAK2 test done in April came back positive. Now I have been diagnosed with PV. Is this possible? I am scheduled for another bone marrow biopsy tomorrow.
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I am 78 with ET JAK2, started taking HU 500 mg daily in June 2022. Started with daily headaches, went off it for a few weeks. My platelet count at that time was 498 and I am on a blood thinner for AFib. After a month went back on HU 500 mg every other day….headaches are gone and I feel good. I see hematologist again on January 3. I am really hoping I can stay on every other day regimen. I will update after my appointment.
Happy New Year, Eileen
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2 ReactionsDoes the hydroxyurea help with itching ? Also, has anyone out there gone to Moffit in Tampa or Mayo Clinic’s in Minnesota for treatment or trials ?
Itching (puritis) is the symptom that led me to oncology. It was zyrtec that relieved the itching for me. After about 5 years, I cut back then was able to quit it.
Then when I was diagnosed with pv in addition to mgus/smouldering myeloma, was when I started Hydroxyurea. Occasionally I have itching now when, for some reason, the histamines act up, then I will take a zyrtec.
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1 ReactionThanks, I’ve been using childrens Benadryl which helps sometimes .I will try Zyrtec , Is it non drowsy?
Yes, and BTW clariton did nothing... go figure!
Do you take it everyday or just when you feel the itch come on ?
I took it twice every day for 5 years, afraid the itch would return. Finally then i quit and only take it as needed.
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1 ReactionDoes your reply to fishergramma (regarding answering "yes" to a general question about whether we have cancer) also apply to folks like me who are afflicted with PV?
Hello, @vnvet, Welcome to Mayo Clinic Connect.
Polycythemia vera is a type of chronic leukemia (blood cancer) that causes your bone marrow to produce too many red blood cells. It generally progresses very slowly. The major risk from the blood disorder is blood clots.
While it’s not as aggressive as some forms of leukemia you’re still needing to list it on a health questionnaire has having a blood cancer.
I’m posting some links to information about PV for you below from our Mayo Clinic site and also The Cleveland Institute.
https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
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https://my.clevelandclinic.org/health/diseases/17742-polycythemia-vera
Was your diagnosis of PV recent or has this been going on for a while? Are you in treatment?
Thanks for your reply Lori. I was diagnosed with PV initially by my primary care physician at the VA a little over a year ago. I have been in treatment with a civilian oncologist, initially requiring phlebotomy and drug (hydroxyurea) but after 4 months, just the drug. I've been stable with lab numbers since then. I'm a combat veteran of Vietnam with a lot of exposure to "agent orange" and am curious about the relationship of PV and other suspicious medical conditions that have shown up since my return (skin and lung) that have not yet been recognized by the VA in it's list of "accepted" links to the defoliants that were used.