1. < Transplants

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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my44 | @my44 | Oct 8 3:45pm

@jennashaped I'm sorry that you're experiencing this pain. I had joint pain after being weaned off of prednisone many years ago (this was not after a transplant). I had been on prednisone for a total of 13 months and upon being tapered off of it, I had pain in my finger joints. I don't remember how long it took before the pain went away...but it did go away. If the pain you have is truly from coming off of the prednisone, I think your transplant team would probably be in the best position to determine if you need to go back on the prednisone and be tapered off again. In the meantime, I do hope that you can get some relief and that your pain can be resolved soon. Wishing you all the best! ❤️

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 8 7:47pm
In reply to @jennashaped "I just did some searching on the internet to see if other people were having the..." + (show)
@jennashaped

I just did some searching on the internet to see if other people were having the same problem I am. I'm 42 and I'm 2 months post transplant. I didn't have any issues prior to transplant with this type of pain. Now it's everywhere! I'm hurting in my joints mostly but it's all my joints. My shoulders, my elbows, my hands and fingers and wrist, my hips, my knees, my ankles. My toes. Everything! So far, from what I've read, this could have all been caused by them tapering me off the prednisone. I don't like the side effects of the prednisone but I've been told that it might help if I was put back on it and then tapered back off.

Jump to this post

@jennashaped, Congratulations on your recent liver transplant. Welcome to Connect! I am a liver/kidney transplant recipient and don't specifically remember joint pain after my transplant (2009). Maybe I'm one of the lucky ones, or maybe I was so relieved to be rid if the excess fluid in abdomen and my legs that I didn't recognize it. Yep, I know that that doesn't make much sense, however that is all that I remember about it.
I will add that after 5 years, I did get taken off prednisone upon agreement with both liver and kidney teams to taper off prednisone on a slow taper. That is when I remember having discomfort, particularly in my hands and fingers. When I mentioned it to my PCP he suggested a slower taper and that worked for me. My biggest disappointment with getting off prednisone was that there was no weight loss that I expected!

Jenna, I know that we are on a high dose of prednisone right after transplant, and that it is lowered and monitored over the first weeks/months. I was not a candidate to be off completely, and so I continued at a low dose for the health benefits to my transplanted kidney. I think that I was on 5 mg during the following 5-6 years when Mayo research indicated that I could taper off. During those years, I had none of the side effects that affect many people with prednisone since it was a low dose. I do know that each one of us reacts differently to medications and that my experience was to not notice any side effects. From a non-medical perspective, I look at this a decision about whether you want to continue with the joint pain. It sounds like you might have a choice, because you said that, "I've been told that it "going back on prednisone" might help..."

I hope that you can address this issue soon so that can feel relief from the pain. Why don't you talk to your transplant team about how long you might need to be on prednisone, or how low of a dose would help you? Does that sound like something you might consider?

REPLY
1 reply
my44 | @my44 | Oct 8 9:36pm
In reply to @rosemarya "@jennashaped, Congratulations on your recent liver transplant. Welcome to Connect! I am a liver/kidney transplant recipient..." + (show)
@rosemarya

@jennashaped, Congratulations on your recent liver transplant. Welcome to Connect! I am a liver/kidney transplant recipient and don't specifically remember joint pain after my transplant (2009). Maybe I'm one of the lucky ones, or maybe I was so relieved to be rid if the excess fluid in abdomen and my legs that I didn't recognize it. Yep, I know that that doesn't make much sense, however that is all that I remember about it.
I will add that after 5 years, I did get taken off prednisone upon agreement with both liver and kidney teams to taper off prednisone on a slow taper. That is when I remember having discomfort, particularly in my hands and fingers. When I mentioned it to my PCP he suggested a slower taper and that worked for me. My biggest disappointment with getting off prednisone was that there was no weight loss that I expected!

Jenna, I know that we are on a high dose of prednisone right after transplant, and that it is lowered and monitored over the first weeks/months. I was not a candidate to be off completely, and so I continued at a low dose for the health benefits to my transplanted kidney. I think that I was on 5 mg during the following 5-6 years when Mayo research indicated that I could taper off. During those years, I had none of the side effects that affect many people with prednisone since it was a low dose. I do know that each one of us reacts differently to medications and that my experience was to not notice any side effects. From a non-medical perspective, I look at this a decision about whether you want to continue with the joint pain. It sounds like you might have a choice, because you said that, "I've been told that it "going back on prednisone" might help..."

I hope that you can address this issue soon so that can feel relief from the pain. Why don't you talk to your transplant team about how long you might need to be on prednisone, or how low of a dose would help you? Does that sound like something you might consider?

Jump to this post

@rosemarya and @jennashaped I will add to my previous post that I am currently on prednisone again...this time post transplant. So far, I have not been on prednisone this time as long as I was the previous time (which was 13 months). I started out at a high dose but have been tapered down within 3.5 months to a maintenance level of 5mg per day. I have not had any side effects from tapering this time. There are no plans at this time to take me completely off of the prednisone.

REPLY
muddlycrew | @muddlycrew | Oct 9 8:37am
In reply to @jennashaped "I just did some searching on the internet to see if other people were having the..." + (show)
@jennashaped

I just did some searching on the internet to see if other people were having the same problem I am. I'm 42 and I'm 2 months post transplant. I didn't have any issues prior to transplant with this type of pain. Now it's everywhere! I'm hurting in my joints mostly but it's all my joints. My shoulders, my elbows, my hands and fingers and wrist, my hips, my knees, my ankles. My toes. Everything! So far, from what I've read, this could have all been caused by them tapering me off the prednisone. I don't like the side effects of the prednisone but I've been told that it might help if I was put back on it and then tapered back off.

Jump to this post

@jennashaped
YES! It will help. And it won’t be forever so don’t fret. Exact same scenario for me but mostly my hands - I couldn’t open my hands in the morning. I also eliminated sugar and gluten from my diet - I promise it’s not hard - as both cause minimal swelling but enough to cause joint issues (at least for me). My LT transplant was 5/3/23 and I am now 56 yo. Once I tapered completely off steroids and removed the sugar and gluten (I cheat once and awhile, not necessarily Keto), I have been and remain joint-pain free. I posted about my journey if you want to see my profile. Good luck! And congratulations!!!!

REPLY
1 reply
muddlycrew | @muddlycrew | Oct 9 8:39am
In reply to @muddlycrew "@jennashaped YES! It will help. And it won’t be forever so don’t fret. Exact same scenario..." + (show)
@muddlycrew

@jennashaped
YES! It will help. And it won’t be forever so don’t fret. Exact same scenario for me but mostly my hands - I couldn’t open my hands in the morning. I also eliminated sugar and gluten from my diet - I promise it’s not hard - as both cause minimal swelling but enough to cause joint issues (at least for me). My LT transplant was 5/3/23 and I am now 56 yo. Once I tapered completely off steroids and removed the sugar and gluten (I cheat once and awhile, not necessarily Keto), I have been and remain joint-pain free. I posted about my journey if you want to see my profile. Good luck! And congratulations!!!!

Jump to this post

@jennashaped
Forgot to mention I completely tapered off steroids about 6 months post transplant. My team was 100 on board and it was a low dose.

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