I was diagnosed with ET (CALr mutation) in August 2025. And while my platelet count responded well to therapy, for me, the treatment is worse than the disease. I’ve had slightly elevated platelets since my 30s, but never tested or taken seriously until now at the age of 66. I’ve never had a blood clot, but my hands and feet turn dark, and I wake up with headaches and night sweats.

After taking Hydrea for just four weeks, I developed a severe autoimmune reaction involving my joints and muscles — all joints painful and stiff, muscle weakness, edema (histamine reaction.) I was not able to walk unassisted, needed help to stand, was in severe pain, and wasn’t even able to roll over in bed or lift the covers off without help. The hematologist said he’s never seen this happen and insisted it was from something else. It took me over 3 weeks to recover, and by then my platelet count had doubled, so he wanted me back on the Hydrea. After just 2 doses, my body started responding the same way as before, but this time I took prednisone to stop it from progressing. I still think the hematologist doesn’t believe me, but now I am taking low dose steroids for 3 weeks with the Hydrea. I don’t follow up with the hematologist or rheumatologist until next week, and I’m hoping these doctors can work together to come up with a better treatment plan. I’m also hoping to get a second opinion or get a referral to an MPN specialist, but there aren’t any in my state.

My vitamins is high normal, and I do have mild osteoarthritis, but nothing like what the Hydrea caused. I have always been active and fairly healthy, but this medication is my nemesis! I worry about what it is doing to my body behind the scenes, masked by the steroids.