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DiscussionEssential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (187)Comment receiving replies
Replies to "Hi everyone I just started taking hydroxyurea it’s only been a week. I’m on 500 one..."
Initially I was diagnosed with ET. This diagnosis was made based on my high platelets and a suspect bone marrow biopsy that was not a good specimen. So I trusted my doctor and went along with treatment, which at first was phlebotomy and baby aspirin. My hematocrit was 48 and platelets would not be controlled so I was soon placed on Hydrea. I always felt better after a Phlebotomy which would reduce my hematocrit to around 30. Was like letting some air out of an overfilled balloon. My white count also was not in control. So I decided it was time to see an MPN Specialist. I found one at the University of Michigan. He changed my diagnosis to PV. After 10 years on Hydrea, it just was no longer controlling much so I was fortunate to start Jakafi. It’s much better at controlling my numbers and I feel so much better. I still must take 500mg of Hydrea as well to help control my platelets which were over a million even while taking Jakafi. So in my case I guess you can say I have both ET and PV but after an additional BMB my doctor concludes that my diagnosis is PV. Find an MPN Specialist… even if you must drive a distance. It’s important. You can still maintain your local doctor but having a specialist consult in your case will help.
Hi @blondie65. Blood conditions can get a little confusing. It is possible to have both PV and ET. I recently replied to two other members who share your diagnosis, @rubles and @taisaint.
Here are the links to both similar replies where you’ll find information on the Myeloproliferative Disorder that causes PV and ET.
https://connect.mayoclinic.org/comment/950331/
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https://connect.mayoclinic.org/comment/967884/
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These were found in this discussion group:
Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-4/
I hope the information is helpful! Were you having symptoms prior to being diagnosed?