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Any thoughts on how to reduce achy knees, hips and now jaw joints?

A myMPNteam Member asked a question 💭

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.

November 6, 2025
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Reactions
A myMPNteam Member

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.

November 7, 2025
A myMPNteam Member

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.

November 6, 2025
A myMPNteam Member

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.

November 7, 2025
myMPNteam

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

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 kinds of pain and weakness, but switching to a different medication helped them regain strength and improve their quality of life.

Here are some approaches that may help manage your joint pain:

Topical treatments:
- Creams, lotions, or gels rubbed into the skin
- Patches or sprays applied to affected areas
- Work best for joints near the skin surface

Gentle movement practices:
- Yoga combines deep breathing and body poses to reduce stiffness and improve mood
- Tai chi uses flowing movements and meditation to reduce pain and improve range of motion
- Both can help increase feelings of well-being

Physical support:
- Physical therapy can help build strength and prevent injuries
- Massage on affected areas may soothe painful joints and reduce stress
- Weight management reduces pressure on joints (losing one pound reduces four pounds of pressure)

Home remedies:
- Cold compresses to reduce inflammation
- Gentle pressure point massage on painful areas

However, since your symptoms are worsening and now affecting your jaw, this really needs medical attention. Your doctor may consider adjusting your treatment plan or trying a different medication that works better for you.

November 6, 2025
A myMPNteam Member

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.

November 7, 2025

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