Joint Pain after Organ Transplant

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!

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?

@davecummings, I want to check in with you and I’m wondering if you have spoken to your transplant team about your back pain and dizziness. Did you find any relief? Was it the medication? How is your overall recovery coming along?

Good morning

I'm 3.5 years post liver transplant. I've been experiencing quite a bit of joint pain. Particularly in my lower back, hip, elbows, left shoulder, feet and hands. Has anyone else experienced this? I'm going to see my family Dr but curious if anyone else knows if it's a tacrolimus side effect.
Thank you 💗

I am 10 months post liver transplant and within the last 2 months I have started experiencing the same conditions. ""Especially in my hands"". I can barely open a twist off jar anymore and it wasn't an issue before a couple months ago. I started to look into it and there are a couple possibilities. (info from my Ins carrier support team) First and foremost, I was told that the Fluconazol (Diflucan) can have an overpowering interaction with the Tacrolimus. It was suggested to talk with the Doctor and maybe decrease the amount of Fluconazol I take daily. They said that the Fluconazol can decrease the effectiveness of the Tacrolimus allowing several possible side effects to be more pronounced. Right now I'm on 200mg Fluconazole in the morning and 1mg Tactrillimus in the morning and .5mg Tacrolimus in the evening. Secondly, I was told to check and then keep track of the manufacturer of the medications I'm taking. Apparently, some drug stores will give you the same drug although they might switch it out with a different manufacturer. I was told you can ask the drug store to check into that and confirm. I haven't looked into either yet as I just got this information yesterday. But I do plan to look into both.

Thank you for your response

I only take 2 mg tacrolimus 2x's per day. And ursidiol for my liver disease.

I was on Fluconazole / Diflucan when I had a pancreas transplant going on 19 years ago. At that time my Dr. started reducing the dose. Could that be an option or is there an alternative med that could be considered?

Here is a link to another discussion where members with transplants are also engaged in conversation about their joint pain experiences since their successful organ transplant.

Joint Pain after Organ Transplant
https://connect.mayoclinic.org/discussion/joint-pain-liver-transplant/

I just did some searching on the internet to see if other people were having the same problem I am. I'm 42 and I'm 2 months post transplant. I didn't have any issues prior to transplant with this type of pain. Now it's everywhere! I'm hurting in my joints mostly but it's all my joints. My shoulders, my elbows, my hands and fingers and wrist, my hips, my knees, my ankles. My toes. Everything! So far, from what I've read, this could have all been caused by them tapering me off the prednisone. I don't like the side effects of the prednisone but I've been told that it might help if I was put back on it and then tapered back off.