CommunitiesMyeloproliferative NeoplasmsHas anyone experienced cytokine storm after stopping Jakafi suddenly?

Has anyone experienced cytokine storm after stopping Jakafi suddenly?

KE

Community Member

5 months ago

Anyone here ever experience a Cytokine Storm? Well, let me tell you… It is not a fun experience! I was on 15 mg of Jakafi, two times a day and after six weeks, my cell counts all bottomed out, so… my heme doc stopped my Jakafi and after 3 days, I became ill…was considered pancytopenic with even lower blood counts: hgb 8.1; plt 47; WBC 3; and RBC 3. I passed out several times, had nausea, a tight chest pain and killer headache; a-fib and pvc’s on my EKG, dizzy, and BP 80/50, HR 50; freezing cold even with 6 layers of warmed blankets. And covered in bruises. It was not fun! I will never allow a doc to stop my Jakafi cold turkey again! Now 3 days later and still feeling bad! Plus, may need to switch to something else if Jakafi is going to wipe out my counts!

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