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@loribmt Thank you for your reply! I was diagnosed last July with MDS with 5q deletion through bone marrow biopsy. I had left knee replacement in August and my recovery was almost miraculous (I had right knee replacement 2 years prior). I was doing great with no pain until I started Vidaza infusion in October. 2 weeks later I had a pulmonary embolism & 2 weeks later I passed out at church from low blood pressure. Rough start! But I’ve really been doing well since then EXCEPT for the bad pain in both knees which started with my 1st treatment. It has continued to get worse over the past 6 months. Now, my shoulders hurt too. My doctor said no one has told him that they have had bone & joint pain with Vidaza. I googled it & I think it is listed as a possible side effect. I just wonder if anyone else has experienced this.

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Replies to "@loribmt Thank you for your reply! I was diagnosed last July with MDS with 5q deletion..."

Good morning, @bbmj06 Having those painful joints must really impact your day! I wonder if there’s an alternative medication your doctor could try for you to see if it makes a difference? Have you been able to see a rheumatologist to see if this is arthritis? For a time I had some serious issues with joint issues from a medical condition (not related to yours). Until we learned the cause, acupunture treatments helped lessen the pain. Just make sure it’s a licensed practitioner. It’s just a thought, but have you ever tried acupunture?