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Primary Myelofibrosis: so unsure of everything, need answers
Blood Cancers & Disorders | Last Active: Apr 14 10:05pm | Replies (15)Comment receiving replies
@eloise999
I've had PMF for a year (Hydroxy 1,000mg/day) after platelets at 1.4 million and have the same problem with my teeth. I recently had 3 stents places in my widowmaker artery. My knees are shot and the one replacement knee has been recalled for replacement but I'm not fixing anything while focused on the PMF. Platelets now ~650
Replies to "@eloise999 I've had PMF for a year (Hydroxy 1,000mg/day) after platelets at 1.4 million and have..."
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@jtcat7
thank you for commenting.
I have to say that although hydroxyurea really did a number on me, horrible ulcers in my mouth and down my throat and the thinning of my hair and then the spontaneous teeth cracking if I put all of those unpleasantries aside it took my platelet count from 17 million down to 786. when I was diagnosed I had blood clots in my brain,my heart, both kidneys, my liver and my spleen. so I'm extremely grateful, truly I am. once they had my counts right that doctor left and I was sent somewhere new. I came to her prepared with all of my research and we landed on Jakafi. I tolerate it much better but the damage is already done. do you get migraines by chance. this is something new for me.