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Joint Pain after Organ Transplant

Transplants | Last Active: Oct 9 8:39am | Replies (85)

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@davecummings

I am post liver transplant almost 3 months. I have upper and lower back pain as well as dizziness and headache when upright. I’m off prednisone and they’ve tapered my tacrolimus/myfortic because my white cell count is so low. My operation was very difficult and took nearly 10 hours to complete. Any and all responses will be greatly appreciated. Thank you!

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Replies to "I am post liver transplant almost 3 months. I have upper and lower back pain as..."

Hi @davecummings, congrats on the new liver. It sounds like it was a difficult journey to get here. Three months is still pretty fresh and I'm sure you're going through many adjustments, not only with medications.

I'm tagging fellow liver transplant recipients, like @rosemarya @muddlycrew @jovanna @juli175 @grateful76 @xplantguy1212, who have shared similar joint pain while tapering from prednisone and post transplant. Some have also shared how these issues have since resolved.

Dave, have you reported your side effects of back pain, dizziness and headache as well as the joint pain with your transplant team?

@davecummings, I am wondering if your long and difficult surgery might be the culprit for your back pain. After my liver/kidney transplant surgery I also remember back pain along with adjusting to the new medications. When I inquired about my achy back, I was informed that during surgery our body, while on our back, is stretched in a backward position so that the liver area is more accessible for the removal and transplant. At 3 months, you are still healing inside, and could it be that your long surgery caused more strain on your back? I also wonder whether you might be overdoing any lifting? Were you given any lifting restrictions?

Since you have mentioned medications, I think that you will find this link a helpful summary of some of the common side effects.
Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
Davecummings, I, along with Colleen, want to encourage you to tell your transplant team about your dizziness and other symptoms. I am guessing, from my experience, that you will be having a post transplant appointment soon, but this early stage in recovery is not a time to try to tough it out. If you have not already contacted them, please accept the recommendation of a soon to be 15 yr survivor, and call them. They want to know when your meds need to be adjusted or if something else is involved. Are you able to get any physical activity with the back pain and the dizziness?