I never had joint pain until 6 months into taking hydroxy. It’s getting steadily worse and now my jaw is hurting. Diagnosed with ET CALR one year ago.
Ken. I would agree with you (posted my update yesterday btw) .
Hi Carol, I have been on Hu for about eighteen months now, and as doses increased so have the side effects, and the list is now very long I'm afraid. Some can tolerate the drug at the low dose you are on but many cannot. Sadly it is the cheap option that medics are sometimes duty bound to offer first.
Carol, I'd offer a common sense approach. Get off HU. You tried, its not tolerable and there are better options.
Sorry for being blunt, but reality is important.
I can see the issues you are having, very frustrating for you. The good news is that you are on a low dose, and these things progress slowly so not too much harm done. Generally with MPN's the routine is to start patients on Hu and see how they go, it is easy to administer, cheap, and easy to monitor. If you complain about side effects ruining quality of life they will be compelled to try something else.
Hopefully you can get to see a Hematologist asap. Best wishes to you.
How can joint pain from hydroxyurea be reduced?
Joint pain is a challenging side effect that some people experience with hydroxyurea. Since your pain started after beginning the medication and is getting worse, it's important to discuss this with your hematologist. A myMPNteam member shared that hydroxyurea caused them all Show Full Answer
Thanks for your responses. My hematologist had to take a six month leave of absence and the best that UT Southwestern Medical Center could do for me with their hundreds of doctors was to give me an appointment in 4 weeks with a Nurse Practitioner who specializes in Geriatrics. Beside being put off by the geriatric part (I’m only 67), I seriously doubt this NP will want to change my meds. It’s very hard to find a new hematologist- their wait lists are very long.
I was hoping to figure out how to make do until my doctor returns.