Joint Pain after Organ Transplant

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.

Hi @8899 - you are on a pretty low dose of Tacro already. Tacrolimus is a calcineurin inhibitor and I suspect you are suffering from CIPS, calcineurin inhibitor pain syndrome (AKA Tacrolimus Pain Syndrome) as I was. The good news is it lasts < 2 years from everything I’ve read. Apparently your body eventually acclimates to the Tacro. In my case it was less than a year, and only really bad for about 8 months before I started to see improvement. Gabapentin does NOT replace Tacrolimus. It is a non-narcotic pain med that helped relieve my symptoms.
I got different reactions depending on the (Phoenix) Mayo doctor I saw. One doctor said he had never heard of it, but after a quick google search he at least acknowledged it was a real thing and put me on calcium channel blockers temporarily. Another said it was all in my head until I came in with massive bruises on the tops of my feet from stress fractures. Then he conceded maybe it’s CIPS but that is extremely rare so it wasn’t likely. That attitude was really frustrating.
For me the trick was to keep moving so I didn’t stiffen up, manage the pain with Gabapentin, and take the calcium channel blockers. Honestly the pain clinic didn’t do anything for me because I was already working with a personal trainer, and the ortho that diagnosed me had already prescribed Gabapentin. If you want confirmation you can go to an orthopedic surgeon. An MRI should show bone marrow edema (they just did my knees and the long bones had edema on either side of the joint). They didn’t do scintography on me because he felt the bone marrow edema was sufficient confirmation, but that’s another option if you want proof to take back to Mayo.
Hang in there and don’t stop taking your immunosuppressants! They are keeping you alive, and this is temporary even in extreme cases like ours. I am now 5 years post and I feel great. Once the pain went away it never came back. Good luck to you!

@gphetteplace, Thank you so much for the quick response. I appreciate the response and information. I, too, am a Phoenix Liver Transplant patient. I moved here from San Diego in Nov 2022 specifically for the transplant. For me, I got lucky and received the new Liver quickly, (Aug 2023) My condition was due to PSC, and my Meld score was in the high 20's. I was having issues with fevers due to scarred bile ducts and that had a lot to do with me getting the new liver.
Like you, I just keep moving to keep the pain in check as best as possible. Hands are the worst in the morning, Knee's, Hips, Lower Back, Elbows, and shoulders are pretty much all day.
I contacted them yesterday, after reading all the joint pain issues posted on this Chat site, and they are now working to set a schedule for checking my bones. We'll see how that goes?
Having your information will come in handy to make sure they don't try to give me the run-around. It's more than a little disappointing that they have the nerve to pretend like they've never heard of, or seen, this condition before, especially after reading how many patients out there are experiencing the same exact thing. (Mayo - Very Disappointing)
Thanks for your help and fingers crossed I come out of it as you did.
I'll repost on progress once we get to that point. Thanks.