Joint Pain after Organ Transplant

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.

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.

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.

I'm really late to this conversation. I was in the middle of having my cataract surgery and I simply couldn't see clearly.
When I had pain as I previously mentioned, it was due to my prednisone taper. It was approved by transplant team, but it was my PCP who was able to guide me thru an extended slower taper. My current aches and pains are due to 'not being 50 anymore' according to my PCP.

Some of you have mentioned medications and I was reminded recently by my son that one of his fire crew had been experiencing joint pains that were not normal for him. Eventually his PCP changed one of his blood pressure or cholesterol meds (I don't recall which it was) and it worked to relieve the pain. It might be something to mention to doctor, just in case this is how you are reacting to another med.

@mfilson, @muddlycrew, @jovanna, @juli175, @johnnybroom -
Have you had contact with your doctors and found any remedy for your painful joints? Are you still able to be off prednisone? What is helping provide relief?

@nrbecerril, @xplantguy1212 - Will you tell us a little about yourself and the pain you are experiencing. What would you like to ask?

Your suggestion is spot on! I contacted the amazing pharmacist on my transplant team and she reviewed my meds after I explained my symptoms. She suggested I change statins from simvastatin which is harder to absorb with Tacrolimus thus leaving more in the blood system and causing aches for pravastatin. So far it has worked well and I’m mostly ache free.

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!!