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Joint Pain after Organ Transplant

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

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@gphetteplace

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.

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Replies to "Been there. Could barely dress myself. Couldn’t get out of a chair without help. I was..."

Very helpful!! Where was your joint pain primarily? i suddenly had bilateral pain in my knees about 10+ months after surgery and now it's both my feet too for the past 4-5 months. Hurts my feet on any hard surface and frankly feels like some sort of microfractures on the bottoms, but idk. We're they only able to see with the MRI? Just a regular MRI? I only took tacro for 4 months after transplant, but now cyclosporine for 16 months, and myfortic & prednisone the whole time. Can you tell me more about CIPS? Thanks so much.

how and or why does it go away? can you expand there. thanks so much again!!