Joint Pain

[Allan Romriell]

I am 65 male diagnosed mds-rs june of 2017 on wait and watch. Last blood work showed Hemoglobin 11.8, RBC slightly low and all other counts in the normal range. My question is some days I hurt all over, seems like all my joints ache expecially hips and lower back. I never see that listed in any of the “official” symptom lists but I have noticed a definite increase in joint pain in the last 10 months or so( it started before I was diagnosed). Just wondering what others are experiencing.
Thanks,
Allan

[Mairi Cooper]

Hi Allan –

My dad was diagnosed with MDS 10 years ago (watch and wait) and started Vidaza treatments in the fall of 2012 (age 78). He also had incredible joint pain. (He has always had a high pain tolerance so we were not prepared for this.) We have been told that is unusual. However, his doctor prescribed a low dose of prednisone along with the Vidaza and that has helped immensely. He now occasionally also takes Naproxen Sodium although we were told at the beginning of his treatments that it was not wise with the Vidaza (prednisone was no problem).

Mairi

[Allan Romriell]

Thank you Mairi for the info, I hope your dad doing ok. Its hopeful when I see others who have survived as long as your dad, hope I do as well.

[Chris Ballmer]

Allan:

Joint pain. Here’s my guess. Not a doctor. Just more common sense. We have less, and not as ‘working’ cells and other vital components of blood. You can’t change one thing in the body without affecting everything else. I was surfing this weekend, and when I came back my knee was aching. I didn’t recall doing anything weird to it…but I had an older injury which never really surfaced until yesterday. I imagine our blood does more than just bring food and air to the rest of our bodies, it acts in other ways which are not obvious. Having less of this vital liquid streaming through our bodies, I can see, could cause joint pain in people, not everyone. But if it’s affecting you, then there you go. I’m backing off lots on some of the more ‘dangerous’ sports I’ve usually done, since the risk benefit doesn’t make sense anymore.

[Allan Romriell]

Thanks Chris,
Makes sense to me too. I have had more joint pain as I have aged, a natural progression and old injuries that had not hurt for years started to ache again but I noticed a marked increase about a year ago before I was diagnosed.
At the time I just thought it was age catching me but I think it has to do with the MDS. It continues to get a little worse as I go along and just make sense as many of the joints that hurt are associated with the large bones that contain most of the marrow that is effected. I like you are more careful in how I do things so as not to aggravate the situation. Best of luck to you. Thanks again for the input.
Allan

[Shirley Marshal]

Hi Allan,
Its bad to hear you’re dealing with this. While joint pain isn’t commonly listed as a primary symptom of MDS, many patients do report similar issues. It’s possible that the pain could be related to your condition or other factors. It might be helpful to discuss this with your doctor to explore possible causes and management options. You may try supplements from joint pain by visiting at https://thenaturemeds.com.
Best,
Shirley

[Ernie Sloan]

Hello, Allan. As this organization points out, MDS is a bone marrow failure. A lot of the work marrow does to build cells is done in the larger bones with more mass. Those bones are located around the midsection of the body. Hips, upper legs. I have been on treatment with Reblozyl since May of 2020. It has done wonders with my hemoglobin. But it works hard on the cell making process, which occurs in those large bone masses. The pain that I have in my lower back and upper legs is extreme at times. But with MDS, that is what to expect.

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