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

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1995victoria | @1995victoria | 5 days ago

As my platelets rose over 3 years, so did my bone pain (not in joints), finally I was diagnosed with ET Jak2 and taking HU, 6 years now, the bone pain continues, I don't know if ET or old age, I am OLD. My pain mgmt Dr prescribed tramadol which works so far. And, yes, it is worse at night in bed, often it wakes me up if I don't take pain meds. As Bette Davis said, "Getting old ain't for sissies"......

a10sgal | @a10sgal | 5 days ago

Interesting. I’ve only been on hydroxyurea for my Thrombocytosis for 6 weeks and woke up this morning with pain in my knee (an old injury where I had a meniscus tear surgery 10 yrs ago) and in my thumb area. I don’t know if from the thrombocytosis or the hydroxyurea. 🤷‍♀️ I’ll be discussing with my doctor
about correlation and what pain killer is appropriate to ease the pain. I’ll report back if I get any answers.

eloise999 | @eloise999 | 4 days ago

I experience this. Also. Pain greatest at night or in morning. More activity can cause more pain. It helps to move. Once I get going pain subsides for the most part.

maine | @maine | 4 days ago

I'm doing Tai Chi designed for arthritis. Just enough to help.

1pearl | @1pearl | 3 days ago

No pain here, but I do not take any Hydrea and just do a lot of daily exercise.

1995victoria | @1995victoria | 3 days ago

my dr who is MPN specialist kept telling me that ET does not cause bone pain, but I had bone pain before I was diagnosed and had rising platelets. I've been to MPN conference where they do acknowledge bone pain from MPNs, My dr also kept telling me take tylenol which doesn't help (for me), I finally asked to see pain mgmt dr, and they acknowledged that tylenol doesn't work for everyone, so I got tramadol, which does work.

janemc | @janemc | 2 days ago

In reply to @1995victoria "my dr who is MPN specialist kept telling me that ET does not cause bone pain,..." + (show)

@1995victoria

To me it's logical that, by overworking our bone marrow, ET can cause bone pain.

Doctors seem allergic to saying, "I don't know if that's a symptom"

. . . and far too ready to say "It's all in your head, dear."

Good for you, 1995victoria!

mdramsey48 | @mdramsey48 | 2 days ago

In reply to @janemc "@1995victoria To me it's logical that, by overworking our bone marrow, ET can cause bone pain...." + (show)

@janemc I also have joint pain with Jak2 ET and have been taking Tramadol for years due to an NSAID allergy. Although I have yet to find anyone with easy bruising and bleeding plus of course fatigue!

gajokos | @gajokos | 2 days ago

In reply to @1pearl "No pain here, but I do not take any Hydrea and just do a lot of..." + (show)

Hello @1pearl. We talked a while back. I've been diagnosed with PV about 8 or 9 months ago and opted for the Wait & Observe route, together with a healthy lifestyle and diet. Is that the case for you too? I have been extremely fit and healthy my whole life which I think might have something to do with 55 years of daily yoga and meditation + gym + still riding (and loving) my motorcycle at age 76. Wondering though... Are most participants on this bulletin board suffering from the side effects of hydrea, while people who have had no such side effects remain silent? And are there other people like me who are maybe willing to do an occasional phlobotomy but choose to stay away from heavy-duty drugs and they too remain silent observers on this bulletin board? I would very much like to hear from them.

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)

Hi @gajokos ,
Great to see your post! I am happy to hear that you are doing well as you always have, probably in large part to your healthy lifestyle, etc. I am right there with you preferring the watch and observe route. You ask very good questions. It would be very nice to hear from the silent observers on this site.
Happy riding!

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