Body and joint aches

Alexc1972

Hello everyone,

Hope you are all doing well.

I'm 3 1/2 LT, and I am having excruciating joint pain behind my knees, wrists, and body aches.

I just want to check if anybody has experienced the same thing, because it has already been 3 years, and now the pain is really bad.

I'm not sure if this is a side effect of Tacrolimus or if I should check something else.

Thanks

AliEm14

I don't know if this is helpful, but I do know a lot of people who struggled with hyper mobility post liver transplant (myself included)

It caused a lot of joint pain and subluxations for me until I figured it out. Have you seen a PT? I'd also mention it to your doctor just to see if they have any ideas or directions to point you in to look into it further

Emilia

Hi Alex, I had a LT 7 months ago and I’m experiencing the same pain. I believe it’s neuropathic. While pregabalin helps, it makes me extremely sleepy. I was wondering how others manage this, as I imagine it’s a common side effect. as is not a solution for the problem, but this helps.

TiaBean

I don't know if this helps but I had so many issues on Tacro. I switched to sirolimus and things are better. I would also second what @AliEm14 said. PT would definitely help and they would teach you exercises and stretches that could help.

Heis9072251

I'm only 2 mos post and was feeling really good for the circumstances. However, something very new... the past 4 days -in the evening- whenever I get up & walk my knees, ankles, elbows hurt & I feel so much pain in my back right across where I'd bend over...lower back..I always have a little neck/back pain from our bed...but this is a whole different ballgame. It's kind of crippling actually. Not to mention I can't really twist my back like I used to and "adjust" it... if that makes sense. I wouldn't mention it knowing that there's pain/discomfort involved plt but...I wasn't expecting this. Anyone else??