I have ET diagnosed at 35, now I’m 60 and have been on Hydrea for several years, I started having issues with my feet the last 5 years like swelling and numbness , tingling and pain. I’m usually very active and on my feet constantly even when I’m running tired, so I attributed it to that until I developed ulcers on both feet , first my right heel and later my left foot between my ankle and pinky toe, went to several podiatrist under went many tests for circulation and small or narrow veins… read more
I started out on 500 mgs. Twice daily but when my platelets began to rise in the 800,000 range I was increased to 500 mgs 3 times a day for several years now
Can l ask what dosage of hydrea you took. I have chronic back pain, osteoporosis, and scoliosis that my oncologist says results from my long term mpn. However, to date l have not had ulcers. I have taken hydrea 500mg daily, never any more for nearly 20 years .
I haven't had leg ulcers, but I did have a pretty rough time with Hydroxyurea too. In my case, the worst side effects were diarrhea and constant fatigue. Some days I felt exhausted all the time, and it really affected my daily activities.
It's frustrating that these side effects aren't always discussed in detail beforehand. Thank you for sharing your experience—it's something ET patients should be aware of. I hope your ulcers continue to heal and that your platelet count stays under control.
I just read your comments about your ulcers. I didn't have that side effect from HU. I had to go off HU due to other side effects. Your platelets were not too high, at 560's. A count I would not be concerned with, if it was me. How are you doing now? Did your platelets stay relatively level? Are your ulcers better?
Have you discussed Jakafi, Anagrelide or one of the interferons with your Dr. Maybe a change will help.