Joint Pain after Organ Transplant

Posted by grateful76 @grateful76, Jul 27, 2023

Hello,
Nice to meet you all and thank you so much for being here and supporting each other. My liver transplant surgery was 7 month ago and this month I have a lot of joint pain (arms/shoulder/fingers).
Has anyone experienced the same and any advices/suggestions please?
Thank you so much

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Good Morning.

Thank you @grateful76 for bringing up this topic of joint pain post transplant. I had my liver transplant almost three months ago (5/3/23) and am experiencing joint pain for the first time ever. It occurred to me that the pain could be transplant related (thinking the meds) but wasn’t sure, and then I saw this post (love this chat room). The pain is mostly in my fingers/knuckles, feet and shoulder. If anyone has any insight or has experienced this, please share. I see my hepatologist soon and will discuss with him and share any insights he has.

Thank you!

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I had my transplant end of January 2023. Yes I have joint pain. Feet, hands, neck, back. Pretty severe at times. Nothing truly relieves the pain. I also have neuropathy in feet which has gotten worse since transplant. Seeing Dr in Oct. Soonest I could get in!

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@jovanna

I had my transplant end of January 2023. Yes I have joint pain. Feet, hands, neck, back. Pretty severe at times. Nothing truly relieves the pain. I also have neuropathy in feet which has gotten worse since transplant. Seeing Dr in Oct. Soonest I could get in!

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I did not have a liver transplant but have experienced joint pain post transplant as well. I spoke with the pharmacist about it and she mentioned that it seemed like the interaction between Tacrolimus and simvastatin. Several statins taken for cholesterol can cause joint pain and with Tacrolimus it prevents absorption of the med so it causes joint pain. I switched to a different statin and joint pain has resolved. Good luck with recovery and managing the meds.

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Appreciate your answer. Have a beautiful day!

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I'm a little over four months out from my liver transplant. I started experiencing major joint pain starting a few weeks ago, almost overnight. Can't move my fingers when i wake up.Rheumatologist informed me that I have rheumatoid arthritis and prescribed hydroxychloroquine. He also told me to stop taking statin, which I've suspected as being a problem. I hope it works. I hope this helps you.It's good to know,although it stinks, that others are going through this.

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@johnnybroom

I'm a little over four months out from my liver transplant. I started experiencing major joint pain starting a few weeks ago, almost overnight. Can't move my fingers when i wake up.Rheumatologist informed me that I have rheumatoid arthritis and prescribed hydroxychloroquine. He also told me to stop taking statin, which I've suspected as being a problem. I hope it works. I hope this helps you.It's good to know,although it stinks, that others are going through this.

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Thank you very much for your reply. I appreciate it so much.

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You're very welcome. I hope we can share one another's progress with this.I read the arthritis meds I just start taking won't 'kick in' for 12 weeks. Be well.

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It’s been 3 months since my liver transplant and I too have had terrible joint pain along with neuropathy and swelling in my feet and hands. I recently stopped taking Gabapentin as it wasn’t effective for me. My PCP recommended taking Magnesium 133mg, 3x daily as a replacement. I have noticed a little improvement in my ability to sleep at night since starting it.

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@juli175

It’s been 3 months since my liver transplant and I too have had terrible joint pain along with neuropathy and swelling in my feet and hands. I recently stopped taking Gabapentin as it wasn’t effective for me. My PCP recommended taking Magnesium 133mg, 3x daily as a replacement. I have noticed a little improvement in my ability to sleep at night since starting it.

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Thank you so much.

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I went to my hepatologist yesterday, 8/8/23. We discussed my significant joint pain along with some other issues, and he believes my body wasn’t ready to completely wean off of prednisone (transplant 5/3/23). And in hindsight, my issues began slowly the day after I finished my last dose of prednisone. He put me back on a low dose, 5mg daily, and I will taper off again later/soon. I have taken two doses and I already feel relief in my feet and can open fingers without difficulty. The pain is still there, but the relief I’ve felt with only two doses is encouraging. I realize how wonderfully potent and dangerous prednisone can be, as is my doctor ofc, so we are monitoring everything closely. I hope this helps someone.

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