MDs and bone pain

[Ann Jones]

Started having bone pain, worse in mornings, primarily in wrists and hip bones. My clinic says not part of MDS.
Thoughts??

[Allan Romriell]

Ann,
I know that bone and joint pain is not listed as a symptom of MDS but I know my joints, and bones, hips and leg bones mostly, hurt more now than they did before my MDS started. My hips do hurt in the morning particularly after sitting for a while and then try to get up. I have low risk MDSRS variation and my oncologist allows me to take 2 Aleve a day to help with pain and sleep better. It does help for now. My platelets have been holding in the 120-140 range so far. White cells are ok, hemoglobin in the 11’s and red count slightly low. I was diagnosed in June of 2017 and have been basically stable since. I wish you the best, its a difficult disease as its so different for everyone.
Allan

[Bob Cook]

Same here, told not related. But I’m 57 and active so joint pain not normal. For me it’s knees and elbows. I noticed caffeine and certain breads make it flare up much worse…. so I cut those out of my diet and made a huge difference.

[Laura Jacobs]

My husband had bone pain and was also told it wasn’t MDS. He recently found out he was deficient on vitamin D which may be a cause too.

[stacey]

I was diagnosed in 2004 with MDS and am now 49. Good point Laura, Vitamin D could be a cause. I know I have had low Vitamin D since my diagnosis, and I once took a doctor prescribed mega supplement of Vitamin D and for some unknown reason didn’t absorb it. It still trends low. In addition, I had a tear and herniated disc years back, and they mentioned they saw I had an abnormal amount of osteoarthritis for someone of my age. I have also had off/on unusual problems with my legs — days where I woke up limping for no reason; times with heaviness in legs plus ankles aching in bed at night; below my knee caps ache some days. I know a scan on my legs I had last year also showed osteoarthritis. It made me wonder: does MDS contribute to arthritis flare ups? A certain amount of arthritis is expected as we age, so I don’t really know what to think.
-Stacey

[mdsfound]

Bone pain is a symptom that many patients experience with MDS. This can be due to lack of oxygen to the muscles, an immune component to MDS much like arthritis.

[Amy Clark]

My husband has bone pain in his ankles, upper legs, hips and upper back all the time which gets worse at various times during his oral Dacogen cycle (Clinical Trial with ASTX727). The pain spikes high for a couple of days when each of his counts drop, first the RBC, then the platelets, and then the WBC. The pain also spikes severely for one to four days after he is active. Active being walking a mile in the neighborhood or riding a stationary bike for a few minutes. He was doing these activities once or twice a month until the made the connection. Now he barely does anything that active. Along with the pain, his face breaks out in a red rash each time preceding the spike in pain. It is like an announcement that the severe pain is coming.

Our doctor at a COE said that he doesn’t have any patient that has pain BECAUSE of the Dacogen or hypomethylating agent. He said it must be the disease process causing the pain and maybe the disease is getting worse. We will find out more after the next BMB in a month. My husband had pain before the Dacogen started and it never went away even when his counts because more normal, so there doesn’t seem to be progression to us, but what do we know. Lastly, He never had a facial rash come and go like this until he started the medications for MDS. He has fatigue commiserate with the bone pain.

Has anyone else had pain that spikes with the low counts or exercise? Any rashes along with the pain? I am so thankful we can share this information and learn from each other’s experiences.
Praying for all of you out there with this disease and for your loved ones.

[Amy Clark]

To clarify, his pain started only a few months before he was diagnosed with MDS, when he was also having night sweats, joint pain, fatigue etc. The pain was one of the symptoms that brought him to the doctor in the first place.

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