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@gphetteplace

The fifth doctor I saw tried prednisone (unsuccessfully) and ordered a knee MRI. They found I have bone marrow edema, consistent with calcineurin inhibitor pain syndrome (CIPS). I’m already on a low dose of Tacrolimus, so right now they’re managing the pain with Gabapentin. I’m up to 300 mg at night, but 100 mg is enough during the day. My symptoms are similar to yours. It started in my knees and hips, and within a few months all my joints were affected. If I sit too long I can barely stand up. I’ve found stretching and low impact exercises help immensely. If I don’t stay on top of it my muscles tighten and the pain is worse. At least with the meds I’m sleeping! Thank you for the well wishes. I hope you are better soon. Does the gabapentin help the numbness? I know it’s used to treat neuropathy.

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Thank you for your insights. I did research on CIPS and added to my files to discuss with my doctor. Gabapentin doesn’t seem to work on the leg numbness, but I was having sharp nerve pain in my leg which has stopped. I have been doing stretches and qigong most days and walk when weather permits. They tried to reduce my Tacrolimus dose, but my enzymes shot up so I had to go back to the level I started on. I’m hopeful I’ll be able to reduce before my hair all falls out! I wish you greater success at managing CIPS.