I have ET, Jak2+, diagnosis last year platelets were around 800, before BMB and HU I had no symptoms well none that bothered me at all or even thought about it. Went on HU Oct 2015, had lots of side effects but it was manageable, platelets went down very slow and I mean slow. Went to a MPN expert at Hopkins he says get off HU, he did take blood work and he did examine me, said I did not need medicine right now but due to having cancer previously HU was not for me. OK so took a long time to listen but in February got really really sick, really sick, dizzy, vertigo, throwing up water and kidney pain, got scared stopped the medicine. For two weeks had terrible pains in my legs and burning sensation in my face. Finally went away after two weeks, platelets were low at 543 surprisingly. Went back to Local Dr he said you have to take HU! if you can't maybe we will try angrylide. See you in three months.
Went to another MPN expert in another state and he said the samething no medicine right now and if you do need medicine would probably try angrylide. Starting getting constant headaches, not feeling well and just burning pain in shoulders, legs sometimes and especially face, not red just feels hot. Go back to the Hopkins expert, platelets now at 750. He says no medicine yet.
OK I'm really at a lose do not want to really watch and wait it is stressing me out and what's with this burning hot sensation? Had the samething with low platelets after getting off the HU. I also had it when my platelets were in the 500's.
Any advice would be appreciated, go back on HU, try the angrylide or even try to shoot for pegasy. Going back to my local but its been three months he has seen one blood test and said nothing and that's when it starting climbing.
Any advice from people switching from HU to angrylide or even just staying off meds for a while would be appreciated. It is so confusing!