Hydrea and joint pain

Posted by arecchie @arecchie, Apr 10, 2025

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

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

1pearl | @1pearl | 1 day ago

In reply to @gajokos "Hello @1pearl. We talked a while back. I've been diagnosed with PV about 8 or 9..." + (show)

❤️

pineyb | @pineyb | 1 day ago

In reply to @gajokos "Hello @1pearl. We talked a while back. I've been diagnosed with PV about 8 or 9..." + (show)

@gajokos
I’m right at two years from a PV diagnosis. Like others I only found out that I had PV as a result of a routine blood test. However, I had been having vision, disturbances, headaches, and night sweats, which were starting to be intrusive on my regular life. My primary care physician did not catch any of the warning signs and I was lucky that I didn’t have a stroke or something. So if you’re feeling OK and there’s nothing off about your general health, the wait-and-see method is just fine. That wasn’t going to work for me. So I take Hydrea. Alternating 500 or 1000 mg daily. I am 73 years old and a lead an active life. I do have occasional joint pain and maybe bone pain and a bit of fatigue, but that may just be part of being 73. So I don’t complain online about those occasional side effects. And I also don’t mind a phlebotomy once in a while. Although I have not had to have one for over a year now.
I moved into a new house a couple of months ago. I didn’t like the kitchen so I tore it out and replaced it by myself with no help. I got it done in about a month. I also just wrapped up my 40th year as an architecture professor in New York City. I will be back next year, and probably for the foreseeable future.
I suppose all of this puts me in the camp of do whatever works and keep moving.

mumblipeg | @mumblipeg | 1 day ago

I’m 18 mo. in to ET diagnosis and take HU 5 days a week with platelets returning to normal. What I’d like to do is stop the HU and cope with symptoms less invasively. I have leg aches constantly with bone pain. I am so tired out by HU. I’d like my life back but quitting also scares me! I had very high platelets following Covid that caused pain in my feet that was excruciating without constant Ibuprophen. My life has changed so much and I hate being drug dependent-on HU and daily Aspirin and yet still ache. I’d also like to hear about others who handle ET naturally. Is there really an alternative that works without drugs? I’m female, 74 and also depend on daily Levothyroxine due to a complete thyroidectomy. Managing my drug dependency is all I can do at times.
But I do manage and I am grateful to connect on this forum with others dealing with similar days.

janemc | @janemc | 8 hours ago

In reply to @mumblipeg "I’m 18 mo. in to ET diagnosis and take HU 5 days a week with platelets..." + (show)

@mumblipeg

We each must find our own path.

As for me, I'm glad to be "dependent" on HU, because it gave me my life back.

Cons of 7,500 mg each week: dry skin, some constipation, must wear a sunhat.

Pros of 7,500 mg each week: ENERGY! Liberation from killer headaches. Hope for the future.

HU works for me.

eloise999 | @eloise999 | 6 hours ago

In reply to @mumblipeg "I’m 18 mo. in to ET diagnosis and take HU 5 days a week with platelets..." + (show)

@mumblipeg you could consider an interferon. It is not a natural treatment, but can control platelets. As far as I know there is no “natural” treatment. Some people don’t take a treatment and watch and wait, but there are risks with approach too. Sadly, every option we have has a downside and upsides. However, your course of treatment is up to you. Just go into any treatment or watch and wait with your eyes open.

mumblipeg | @mumblipeg | 2 hours ago

Thank you for your insight. I would like to try something better than HU, but with my autoimmune problems, my Dr. is reluctant. I feel best when I stay as active as I can: working outside in my garden, treadmill etc. Hoping to lower my HU dose soon!! Thanks for reading and responding! Best to you, you!

Please sign in or register to post a reply.