I'm new at this website

I'm new at this website

I have had Essential Thrombocythemia for 24 years. With increased doses of Hydroxeurea I was becoming anemic. The doctor switched me to Anagrelide which he said only targets the platelets, but the red cells did not come back. So, he did a bone marrow biopsy a year ago and discovered I now have Myelofibrosis. My doctor put me on 25 mg of Jakafi 2X per day. My platelets and white cells became perfect, but I am even more anemic. I'm on weekly Procrit shots which raised my hemoglobin from 7.0 to 7.9. Then the Jakafi was reduced to 20 mg which put my hemoglobin up to 9.0. I'm hoping the doctor will agree to reduce the Jakafi to 15mg at the risk of platelets being a little high, but they have been high for years; and that should get my red cells to where I feel good again.

Except for the increased anemia, I refer to Jakafi as the fountain of youth drug. The first month before the red cells dropped, I was feeling great. My old man joint and muscle pain instantly disappeared and my mind seemed to become more alert. Now I'm wondering if the Jakafi has stopped me from needing to get up to pee from 1 to 3 times a night. I have been sleeping through the night several months now. My spleen was only slightly enlarged and now is normal again.

I'm 71, going on 50. :O)

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  • Hello, I don't really know how long I've had ET but was diagnosed with CLL in 1999 along with fibromyalgia. My platelets topped out at 1148 so they put me on Hydrea in June(I think) and they're now down to 141. I'm still dozy and tired. Anyway good info from you and I wish you only the best of health.....Cat