Hydrea and joint pain

Posted by arecchie @arecchie, Apr 10 1:00pm

I've been on HU for 7 months and doing quite well. In the last 2 weeks, I've noticed that everywhere I have arthritis in my body (hands and wrists, feet, shoulders and hips) the pain has become quite severe. When I lie down at night the pain intensifies. I don't know if it is Hydrea or not, but has anyone else had these problems with HU affecting their arthritis pain?

When I stand up to walk, the first 10 steps are really painful in my hips.
Also, when I walk now, I've noticed that my shoulders are slumping over and I'm bending slightly forward from the waist, which is something I've never had before.

Any thoughts or knowledge would be helpful.
Thanks,
Ann

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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.

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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.

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