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I have JAK2 ET and MPN: Anyone else have these symptoms?
Blood Cancers & Disorders | Last Active: Jun 19 5:40am | Replies (63)Comment receiving replies
Hi, I was do with ET 3 years ago, + JAK2 via BM bx. I am cold intolerant and my knuckles turn purple in the cold. I am on Hydrea 500mg M-F with a low dose Asa. My lower legs have reddened and I am not sure if it’s med related or the disease process. Also my elbows get very red. Platelets are in check. No Lyme disease. I am glad to find this forum.
Replies to "Hi, I was do with ET 3 years ago, + JAK2 via BM bx. I am..."
I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on both the MDS side and the MPN side. The RS-T component is Myelofibrosis. I take one Hydrea 500mg tablet 5 days per week and two Hydrea 500mg tablets on Tuesdays and Fridays. I also take a daily low dose Aspirin every day. I get blood labs every month. I get the burning in my feet and calves but not sure if it’s related to the MDS or MPN disease. I underwent a whole Exome Sequencing test which indicates I have Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B which are PN diseases. It’s complicated but so far it’s bearable. Hopefully, the blood cancer won’t mutate to full blown CML requiring a stem cell transplant.
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Welcome to the club! I, too, am cold intolerant and have Reynaulds (which mayor may not be related to ET w/JAK2). Do your fingers or toes turn white before darkening when the blood flow returns? That’s classic Reynauds. In any case, you should contact your Doc.