Hydrea and joint pain

A lot of this is familiar--worsened dental issues (avoid implants; Dad had ET and got infections at implant site), joint pain (yoga stretches), erythema and increased severity of skin irritation (cold compresses and religious use of hypoallergenic non scented mousurizers), bowel issues (probiotics, Tums, and avoiding milk and some carbs), more allergies (claratin and asthma inhaler). I've reported it all to hemo. Can't get her interested because, for me, all these things are intermittent nuisances. But they add up. GP is more helpful. I do plan on asking for a nutritional consult next month BUT only if the nutrition person understands I'm a geriatric chemo patient. There's so much dietary info out there that a generalized session is a waste of time.

It’s impossible for me to say the joint pain I have is attributable to HU because after being hit by a car 30+ years ago, I have a tendency to think that, and my 77 years, are the proximate cause of my pain, However, since taking HU I have experienced symptoms that mimic yours, especially the bending over at waist.
Initially, when seeing my hematologist, I complained of more back pain, leg pain, and hip pain and problems walking and balance. The pain in my hips when in bed was worse. I was referred to an Internist at Mayo. He suggested physical therapy, meditation and not watching so much TV news!
I decided to go to PT and had a great PT who worked on my balance and stretching exercises. After about a year I decided I could do the exercises at home, and I do although less frequently. I think that PT saved me. I’ve never been an exerciser, per se, but I had not realized how little I was moving because of joint and leg pain, I still cannot walk any distance but manage to do what I have to do outside my home by using a cane, mostly for balance.
I also bought a recumbent elliptical, which I discovered at PT. That is so easy to use, comfortable and I know it has strengthened my legs and arms.
The stretches have virtually eliminated the hip pain.
I cannot tell you how much I hate exercising! My idea of great exercise is sitting and reading a good book but I think it saved me and things would be much worse if I hadn’t started and kept at it.
If it is a side effect of HU then it is what it is because when this journey started I was seeing the doctor monthly and having phlebotomies about every 60-90 days. I see the doctor every 6 months now (or as necessary)and it’s more 90+ days between phlebotomies.
I nope this helps.

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.

@lisanell That sounds awful!

My first thought is to ask how much HU you're taking in a day. Sometimes a high dose all at once (more than 500 mg per day to start) can cause side effects like bone pain.

Anagrelide is an alternative to HU, and you might ask the hemo if you could switch to that.

I also have CALR. ET onset about 17 yrs ago. I am 71. No problems with HU x 7 years, but we are all very different in how we respond to this drug, especially if there are co-morbidities.

@nohrt4me Yes, I think everyone responds differently to Hydrea. I take 500 mg daily. Since my platelets respond so well to it, I’m hoping the hematologist will reduce the dose, because I don’t want to keep taking steroids. I’m wary of taking Anagrelide due to a history of palpitations and PVCs, although I don’t have heart disease.

@lisanell
You obviously can't tolerate the hydroxyurea. This is true for many patients but other meds are available.
Join the Healthunlocked site. Lots of discussion on autoimmune reaction to HU. Doctors should do research and not just tell patients that they never heard of a medication side effect. I'm sorry that happened to you but this is too serious to let it go on without the advice of an MPN specialist. They will consult over the phone if not in driving distance. Don't just suffer through it.

@mw2023 thank you for the information

@lisanell Yes, I have a wonky mitral valve, and my cardiologist looked at HU vs anagrelide and said HU would be a better choice for me. I hope you can get some traction on this. There is besremi or pegasys, but those might be prohibitively expensive, depending on your insurance.

Been on HU since May 2025 very little leg or hip pain until these days have gotten cooler but I was having pain in my left hip due to arthritis in my lower back. Had AFIB can't take anything but Tylenol had to give up any Nsaids. But strange thing pain went from left side to right side. I like someone else have trouble getting up then have to take a few steps to get going. Don't see my Doctor until Nov 19 hope we can work something out.

It is my understanding (and experience) that Hydrea can exacerbate existing autoimmune conditions. So if you already have arthritis, it can make it worse. I've also read that interferon and Peginterferon can cause it too. I have been having to take Prednisone to control severe autoimmune reaction in order to take hydrea until I can follow up with my hematologist next week.