I have had Pv for 1 year. I am on a medication called Jakafi. It brings the white cells down,but it also brings the red cells down to a very dangerous level. my hemocrit is 8. any suggestions?
Hi Margo,
I must say, I am surprised that you would receive Ruxolinib (Jakavi) so soon in your treatment. Normally the usual treatment for new patients (unless seriously affected) is by way of venesection and more latterly other drugs, but not Jakavi. It sounds as if you are resident in USA and I would suggest you discuss your situation with your doctors and ask the reason for your diagnosis and therapy. I take Jakavi myself but this is because all other treatments on offer are unsuited or have run their course. I was first diagnosed 20 years ago and received very regular medical attention during this time. Jakavi is a relatively new drug available to treat Polycythemia and very expensive into the bargain. It is a chemotherapy medication. If what you say is correct I would suggest you make a very urgent appointment to see your medical advisers.
Peter.
Hi Margo, did you have a bone marrow biopsy? What dose of Jakafi on? Are you sure your hematocrit is 8? I think you need to see an MPN specialist ASAP. Somethings not right. I am on Jakafi also. I was dx 6 yrs ago. I agree with Peter, you need to see the dr who prescribed the Jakafi real soon.