Joint Pain after Organ Transplant

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

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.

@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.

Hello,
I had a kidney transplant in 2022 and my calcium has been on the high side ever since. The transplant docs told me it was a hydration issue and even had me go in for a saline infusion. It did bring the calcium down but it popped up again. I am not buying the hydration issue and my post-transplant nephrologist told me about a relationship between calcium values and parathyroid values. He added the parathyroid test to my regular blood tests.
So as it turns out, my parathyroid is high and as I googled the symptoms of that, I found many symptoms of conditions that have been bothering me including fatigue and joint pain. So perhaps your doctor will request some additional tests, including parathyroid and thyroid, as well as calcium and vitamins (like Vit. D). I have found that, in my case, the transplant docs don't like to go outside their scope of transplants. So it may mean a visit to a PCP or other more general-focused doctor. Good luck!!

I am a heart transplant recipient and will be celebrating my 1-year anniversary on February 7. 2025. I have daily nerve pain and joint issues since my surgery. a rheumatologist said it might be fibromyalgia but I think it is from lack of movement from hospitalization and recovery. I also was advised to stop my statin for a month. It did help a lot. I look forward to talking more in this community.

Hi, @mddaviscares25.

Congratulations on your upcoming one year heart transplant anniversary next week! 🎉🎊

@mddaviscares25, Hi, and Welcome to Mayo Connect! I am sorry to hear about the joint pain, but happy to hear that you will be celebrating your 1st heart transplant anniversary! My advice is to do something special to honor that day.
I'm beginning to experience some undesired joint pain which has been diagnosed as age related osteoarthritis. Yep! It is the time of my life to be visited by the age related things.
I see that you are seeing rheumatologist fot the joint pain and also stopping the statin for a month. I hope that helps you because I have heard that it has helped others With/without transplant.
Have you started to get some physical activity or exercise? Are you able?

I do exercise by walking or riding my recumbent bicycle. I should be starting cardiac rehabilitation soon. Thanks so asking.

I have found that gentle stretching helps, too.

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.