Joint Pain after Organ Transplant

Thank you so much for your post. My liver transplant was in January 2023 and have been also experiencing a severe joint pain mostly in my upper body: shoulders, fingers, I can’t make a fist with my left hand, can not raise my arms., etc…

Do you have any answers about the cause? Do you think it’s because of your anti rejection meds?

@tylererinm, Welcome to Connect and Congratulations on your liver transplant in June!
I'm a liver and kidney transplant recipient. I has both organs at same time from the same deceased donor. I was prescribed prednisone when I transplanted, and it was reduced over the weeks/months after my transplant. However, I did continue to take a lower dose for a long time afterwards. The research , at that time, showed that with my medical history and double organ transplant that it was best for me to do so. I don't remember any joint pain as you have mentioned. However, years later (I transplanted in 2009) I was approved to be taken off the prednisone. I needed a longer taper than one of my transplant doctors had suggested because that is when I did have painful joints and swelling in my fingers similar to your description. My transplant nurse and my local PCP helped my to go more slowly, My reaction could have been because I had taken a low dose for 4-5 years. Anyway the slower taper worked for me. We are each different, and our bodies respond differently, but I wanted to mention it to you just in case it is something that you might want to discuss with your own doctor or pharmacist.

Overall, How is your recovery going?

Thank you for the info
I would say my recovery is going pretty well overall. I have had minor issues here and there but nothing very serious and I was able to return to work full time 10 weeks after my transplant.
At this point I believe this pain is either CIPS from the tacrolimus or withdrawal from prednisone. And if it’s prednisone withdrawal I would rather deal with this pain than go back on prednisone even at a small dose. I was on a very high dose of prednisone for over a year and have no intentions of introducing it back into my system.
This forum has been very helpful- just to see that I’m not the only one experiencing this pain and it’s likely somehow medication related.

@johnnybroom Thank you so much for your post. I have the same issue with fingers being locked up. It just happened overnight. Are you experiencing any improvements or any suggestions to share? I greatly appreciate your post.
Thank you so much.

Hello, well they had me on hydroxychloroquine for a little over three months but it really didn't help. A couple of other oral drugs they suggested are hard on the liver. So now I'm waiting to hear about possibly starting on Humira which is an injection. It's real expensive. I wish you well. Sorry I couldn't be of more help.

Thank you so much.

Hello,
My liver transplant was in may ‘23. I’ve been telling my doctors for months that something is wrong. That I can’t go for long walks anymore. That all of my joints hurt from neck to toes. It is worse and unbearable in my left arm from shoulder to fingers. I thought it was bc I’m a lefty, Or bc I use to do hair, or bc I’ve bartended for over 20 years. My fingers feel broken and in some places feel on fire. I get shooting pains from elbow to hand and elbow to shoulder. My drs don’t know what’s going on so they have increased things like my tac, taken things away like prednisone. I thought I was the only one and I’m excited to find other ppl with the same issues. Can someone tell me what’s going on if they have any answers? I’m so delighted ppl are talking about this. I hope everyone finds the help they need and keep talking.
Peace and happiness

@eggnog24, Welcome to Connect, and thank you for your sign-off message of Peace and happiness! That is a great way to end a year like yours with your new liver, and to begin the New Year with your new life❤️
I hope that you have read though all of the messages in this discussion. I know that it will take a bit of time, however it is well worth the time to meet others and read their similar experiences with joint pain after transplant.
Eggnog24, I do not recall joint pain as being especially problematic for me, but I did need a lot of time to regain my endurance and muscle mass to do any amount of distance walking or hiking. One thing that I noticed right away is that I tired easily and needed to take a rest from activities because it was easy to overdo any activity. I also found out that I had some difficulty breathing when I went hiking and walking when my prednisone was lowered and then tapered. Upon referrals to specialist (cardiologist and pulmonologist) by my Primary care doctor, I was diagnosed with a form of asthma that had likely become activated by the meds.
Do you give your body ample time to recover after strenuous activity? Is it possible that an old, or hidden condition has been reactivated? And has your transplant team given you the permission to take an occasional Tylenol?
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@xplantguy1212 @grateful76 johnnybroom @tylererinm @gphetteplace @mfilson @muddlycrew @jovanna
How are you doing? Have you found any relief for the joint pain that you were experiencing?

Good morning. Merry Christmas and happy New Year. I'm not a Doctor by any stretch of the imagination, but sounds like RA to me. Maybe ask for a referral to a Rheumatologist. You might get some answers. My liver transplant was October 2020.