I have tried Hydroxyurea and Anagrelide but both of them were intolerable for me. I was getting ready to go on Jakafi (very expensive as others have pointed out). My HCT seems to be under control with an occasional phlebotomy but platelets are still very, very high. At my last Hematology appointment my doctor said he wanted me to try clopidogrel which he said should neutralize the platelets. I still take baby aspirin morning and night. I am 74 and have no symptoms or issues with my PV.
Wondering if anyone else has tried this treatment.
Thanks
Roberta
Written by
Bluetoday1
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Like you I have PV and am HU-intolerant. Phlebotomy-only left me too iron deficient (causing adverse effects) Do be aware that both iron deficiency and blood loss (phlebotomy) can cause reactive thrombocytosis. I have opted for PEGylated Interferon, which has turned out quite well. At 45mcg/week I am in hematologic remission and have had no adverse effects. Both erythrocytosis and thrombocytosis are well controlled. Here in the USA Besremi (ropegylated interferon alpha 2b)was just approved for PV. The evidence in support for the use of ROPEG and PEG is quite compelling.
It would be a really good idea to review all of your treatment options with a MPN Specialist. Most hematologists lack the KSAs to provide optimal MPN care due to the rarity of MPNs. If you are not already consulting a MPN Specialist I would do so ASAP to ensure an optimal care plan. Here are two lists.
Regarding the blood thinning medication, I have only ever taken aspirin. Due to the increased bleeding risk associated with clopidogrel (a DOAC), some docs now prefer a different class of blood-thinning medications that include meds like Eliquis (a NOAC) for patients that need something other than aspirin. Suggest you review with the doc the risks/benefits of each of your choices to reduce the risk of thrombosis.
Hi, I am on 1500 HU daily and Clopidogrel having found that Aspirin with HU made me quite ill. I have been fine with this. Of course, do take advice or ask again if you are unsure. My platelets are under 500 now for the first time. Hope you find an answer.
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