I am now one year into the Mithradite trial and thought a good time for update.
The Mithradite trial is a randomised trial of Ruxolitnib against best available therapy which is either Hydrea or Interferon.
My background is diagnosed with ET three years at age 67 and prescribed Hydrea. The Hydrea reduced platelets but I was cursed with the unbearable itch. Rediagnosed with PV one year later . Started the Mithradite trial one year ago in the hope I woul
d be allocated Rux , had 50% chance. I was allocated Rux. The itch disappeared.
I tolerate Rux reasonably well. Had dizzy spells at the start, gone now, always have a dry mouth, gained a few pounds. but not surprising as the fatigue has hit me like a sledge hammer. I take 20mgs per day, the 30 mgs took my blood counts so low I struggled. But I don't itch.
My latest blood tests , Hb 108, PLT 508, RBC 3.62, HCT .35, red cell distribution 6.5. BMB showed Reticulin grade 1, I have no idea what that means but the bloods have improved as I was bordering anaemia for a while.
I seem to have swapped the itch for the fatigue but I'll take the fatigue any day over the itch.
To sum up I'm happy with it. Although I don't enjoy my former energy I manage and enjoy a good walk every day . I don't post here very often unless I feel I can help someone because I don't want my life to be consumed by illness but am happy to answer any questions I can about my experience with Rux and clinical trials.
Best wishes all.