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!