1. < Transplants

Joint Pain after Organ Transplant

Posted by grateful76 @grateful76, Jul 27, 2023

Hello,
Nice to meet you all and thank you so much for being here and supporting each other. My liver transplant surgery was 7 month ago and this month I have a lot of joint pain (arms/shoulder/fingers).
Has anyone experienced the same and any advices/suggestions please?
Thank you so much

Interested in more discussions like this? Go to the Transplants Support Group.

Curses | @kmlowe | 4 days ago
In reply to @rosemarya "Hi, @kmlowe. Welcome to Connect! I hope that your evaluation is going smoothly for you! It..." + (show)
@rosemarya

Hi, @kmlowe. Welcome to Connect! I hope that your evaluation is going smoothly for you! It is an exhausting exprience for sure.
I want to address your question about pain after transplant. I am going to assume that you are speaking about pain from the transplant surgery and not painful joints?
My response is that pain is well controlled after the surgery. I was transplanted at Mayo Rochester with both a liver and a kidney. Both organs came from a deceased donor in one surgery. I also worried about the possible pain and everything else that is imaginable! After the surgery my pain was well controlled. While in the hospital, I had a pain pump so that I could push a button and the pain med was released into my IV line. The dosage is well contr olled and you will not get hooked on the medication. The doctors and nurses told me that patients do better when pain is controlled, and I totally agree because on the day after my surgery they helped me out of bed to begin slowly walking. After my 7 day hospital stay, I was able to take something orally as/if needed. That was 16 years ago, so forgive me for the vague answer.
If you have not already done so, I would encourage you to begin a note book where you can enter your questions as you think of them. You can take notes during appointments. It is so easy to forget with all that is going thru your mind.
@kmlowe, What other question would you like to ask? How can I assist you as you begin your liver transplant journey? Will you be at Mayo for the transplant?

Jump to this post

Hi @rosemarya
Thank you so much for the quick and thorough response! I have not yet started my evaluation, but will do so on March 5 and, as you suggest, I’m keeping a running list of questions! I also have many! And worries! I’m very fortunate in living in Tucson, AZ, a mere two hour drive from Mayo Clinic Scottsdale, and anticipate the best of care. My fear of the pain immediately post-transplant is due to the fact that I had a full hysterectomy almost 20 years ago, and they missed preventing the pain before it started (I metabolize painkillers quickly), and spent two days doing “catch-up”. I know that was a long time ago, and medical technology has so improved, so I’m likely over-worried - but it sounds like you had as good a recovery as possible, and are still with us 16 years later!

Thank you again for your very reassuring response - as questions come up I may also throw them out in this forum (under the correct chat group!).

Cheers
Kelly

REPLY
sherman360 | @sherman360 | 3 days ago

Hi, I had to switch my tacrolimus to cyclosporine + mycophenalate because of an unusual side effect of the tacrolimus. My joint pain in my hands, knees and elbows almost immediately after. That was six months ago. All sorts of clicking in my finger and thumb joints. In fact, the pain in my right thumb joint woke me up this morning. I will be seeing my PCP in two weeks to discuss and will let you know the results of that discussion.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 15 hours ago
In reply to @sherman360 "Hi, I had to switch my tacrolimus to cyclosporine + mycophenalate because of an unusual side..." + (show)
@sherman360

Hi, I had to switch my tacrolimus to cyclosporine + mycophenalate because of an unusual side effect of the tacrolimus. My joint pain in my hands, knees and elbows almost immediately after. That was six months ago. All sorts of clicking in my finger and thumb joints. In fact, the pain in my right thumb joint woke me up this morning. I will be seeing my PCP in two weeks to discuss and will let you know the results of that discussion.

Jump to this post

@sherman360 - I would like to reach out across the miles and extend a Welcome to the Transplant Support Group because I see that this is your post. I hope that the medication change is working well for your transplanted organ, but it sounds like you are now having painful joints. I'm currently beginning my adventure with osteroathritis joint pain (hip) that is related to natural aging. I share this to let you know that I can understand how bothersome joint pain can be, especially at night! I hope that your PCP will have some ideas that will nelp you feel better.

What organ did you receive? How long ago was your transplant? Have you discussed this with the transplant team?
I will be looking forward to hearing about your appointment with your PCP.

REPLY
View MoreView Less
Please sign in or register to post a reply.