← Return to Joint Pain after Organ Transplant

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Joint Pain after Organ Transplant

Transplants | Last Active: Apr 18 1:25pm | Replies (79)

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@grateful76

Good morning, I hope everyone is enjoying this beautiful Saturday morning. I still have issue with my joints, 10 months post the transplant. My pain is mostly concentrated in upper body. Left hand fingers to the point I can not close my hand or bend fingers. Shoulders are very painful and can not raise my arms or move in certain directions. Stopped using Prednisone 6 month ago and currently taking 200mg Fluconazole and 4mg Tacrolimus daily.

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Replies to "Good morning, I hope everyone is enjoying this beautiful Saturday morning. I still have issue with..."

Been there. Could barely dress myself. Couldn’t get out of a chair without help. I was told by my PCP it was old age, likely arthritis, so I went to a rheumatologist. It wasn’t inflammatory. Finally went to an orthopedic surgeon. He did an MRI and found bone marrow edema in all my long bones near the joints. By then I had also started getting stress fractures in my feet. He diagnosed me with CIPS (calcineurin inhibitor pain syndrome) from the Tacrolimus. The good news is it usually goes away within a year or two. For me the worst was over about 8 months after it started. Gabapentin got me through it. BTW, there’s still a transplant doctor that says it’s all in my head. Be your own advocate. I went to 5 doctors before I found someone who would listen.