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Joint Pain after Organ Transplant
Transplants | Last Active: Mar 26 9:56am | Replies (105)Comment receiving replies
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.
Replies to "Been there. Could barely dress myself. Couldn’t get out of a chair without help. I was..."
how and or why does it go away? can you expand there. thanks so much again!!
Hello @gphetteplace, this is a very late response to this conversation, but I have been dealing with this since Jan 2024. Liver Transplant 8-28-23. On a lot of different medications for 4 months post-transplant then stopped most of them. Joint pain started right away in Jan 24".
Mayo Doc's pretty much blew me off and sent me to Rheumatology Doc and of course then CT's/XRay and all that, then they called it Rheumatoid Arthritis. And then of course that sent me to the Pain Clinic. All this happened over 6-8 months and still haven't been seen by the Pain Group. Appoint finally in two weeks.
You are correct when you say they try to make you feel like you have no idea of what you're talking about and refuse to accept any responsibility to look into the possibility it could be a medication interaction/side effect.
My symptoms are what everyone lists here. Joint pain everywhere. Hands, Feet, Ankles, Knees, Hips, Shoulders, Lower Back ect. Pretty severe at times.
My question to you is: I see you say "Gabapentin got me through it" Is that a replacement medication for Tacrolimus? Was it Mayo that made that medication decision for you? Any further detail you could provide would be helpful.
My Medication:
Tacrolimus: 1mg in AM and PM
Fluconazole: 200mg - 1x per day
Atorvastatin: 10mg - 1x per day
Mycophenolate: Metoprolol Tartrate - 12.5mg AM and PM
Thanks.
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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.