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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 28 8:39pm
In reply to @footballmum "Good morning I do not have RA. I've been to see a rheumatologist and had negative..." + (show)
@footballmum

Good morning
I do not have RA. I've been to see a rheumatologist and had negative test results. My sister suffers from RA and the symptoms sound very familiar. My liver numbers took an extreme jump about 1 year post transplant and my team were eliminating causes rather than just jumping right in. I do experience some joint pain and was told it is a side effect of the TAC. I am on a low dose and things aren't too bad. Hopefully that made sense.💕

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Yes, @footballmum. That made perfect sense! I was just curious about transplant and RA after I read your post.
FYI - My immunosuppressant meds are adjusted occasionally. Just this past summer, my tacrolimus was reduced after nearly 5 years with no change!

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1 reply
footballmum | @footballmum | Jan 28 9:00pm
In reply to @rosemarya "Yes, @footballmum. That made perfect sense! I was just curious about transplant and RA after I..." + (show)
@rosemarya

Yes, @footballmum. That made perfect sense! I was just curious about transplant and RA after I read your post.
FYI - My immunosuppressant meds are adjusted occasionally. Just this past summer, my tacrolimus was reduced after nearly 5 years with no change!

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Hello 🤗
My TAC has been at 4mg for the past 2 years. I no longer take mycophenolate or prednisone. I had my liver transplant in October 2020. Right smack in the middle of COVID.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 7 10:39am
In reply to @mandersen "My spouse had a DLT 6 months ago. During one of his blood panels his uric..." + (show)
@mandersen

My spouse had a DLT 6 months ago. During one of his blood panels his uric acid levels were high. This isn't always ordered to monitor on every blood panel. Our team said if he develops any joint pain to contact them as it could he signs of gout. The mentioned pain usually starts in the foot. So far no joint pain, but we are monitoring it to see if another prescription will be needed and added to his regimen.

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@mandersen, congratulations on your partner's liver transplant. Good tip about uric acid levels. I'm glad that he doesn't have joint pain. How is he doing? How are you?

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1 reply
mandersen | @mandersen | Feb 7 12:25pm
In reply to @colleenyoung "@mandersen, congratulations on your partner's liver transplant. Good tip about uric acid levels. I'm glad that..." + (show)
@colleenyoung

@mandersen, congratulations on your partner's liver transplant. Good tip about uric acid levels. I'm glad that he doesn't have joint pain. How is he doing? How are you?

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He is doing good post transplant. Just really trying to add some weight back and that's are biggest struggle. He is maintaining weight mostly. He is doing more each week, and already bored being home all the time. He isn't physically/mentally ready for work yet

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 7 8:36pm
In reply to @mandersen "He is doing good post transplant. Just really trying to add some weight back and that's..." + (show)
@mandersen

He is doing good post transplant. Just really trying to add some weight back and that's are biggest struggle. He is maintaining weight mostly. He is doing more each week, and already bored being home all the time. He isn't physically/mentally ready for work yet

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@mandersen, I want to add my congratulations on your partner's liver transplant, too! I know that you must be as happy as he is that he is doing so well after the surgery. I had my transplant almost 15 years ago, and I also had to gain weight and muscle mass after my transplant surgery. Maintaining his weight is a good thing!
How long ago was the transplant?

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1 reply
mandersen | @mandersen | Feb 9 8:49am
In reply to @rosemarya "@mandersen, I want to add my congratulations on your partner's liver transplant, too! I know that..." + (show)
@rosemarya

@mandersen, I want to add my congratulations on your partner's liver transplant, too! I know that you must be as happy as he is that he is doing so well after the surgery. I had my transplant almost 15 years ago, and I also had to gain weight and muscle mass after my transplant surgery. Maintaining his weight is a good thing!
How long ago was the transplant?

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Almost 6 months. Just 1 month out of hospital and home since last month.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 11 10:30am
In reply to @mandersen "Almost 6 months. Just 1 month out of hospital and home since last month." + (show)
@mandersen

Almost 6 months. Just 1 month out of hospital and home since last month.

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@mandersen, I remember when I came home after my transplant. I was away from home 11 weeks in 2009, although my time was split between hospital and transplant lodging. There is nothing to compare with that 1st night in one's own bed! And away from a hospital setting!

By now, I assume that you and he have already made adjustments to life with a transplant. Is there anything that you wished you knew ahead of time about transplant recovery? Dou have any questions that you would like to ask?

REPLY
mandersen | @mandersen | Feb 11 11:18pm

I wish I knew more about "Upper level thinking". How long does it last, how long does it take for physical and especially mental endurance to come back? Dr only mentioned at discharge and by then it was obvious his mental state was altered. Do the medications cause allergies to show? He is now showing signs of dog allergies.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 14 3:41pm
In reply to @mandersen "I wish I knew more about "Upper level thinking". How long does it last, how long..." + (show)
@mandersen

I wish I knew more about "Upper level thinking". How long does it last, how long does it take for physical and especially mental endurance to come back? Dr only mentioned at discharge and by then it was obvious his mental state was altered. Do the medications cause allergies to show? He is now showing signs of dog allergies.

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@mandersen, "upper level thinking" or cognitive function would be a great topic for a new discussion.

I'm sorry to hear that your husband mental abilities have changed. Was he showing signs of mild cognitive behavior before surgery? Did the doctor mention that this is a common temporary mental incapcity?

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1 reply
mandersen | @mandersen | Feb 14 5:08pm
In reply to @colleenyoung "@mandersen, "upper level thinking" or cognitive function would be a great topic for a new discussion...." + (show)
@colleenyoung

@mandersen, "upper level thinking" or cognitive function would be a great topic for a new discussion.

I'm sorry to hear that your husband mental abilities have changed. Was he showing signs of mild cognitive behavior before surgery? Did the doctor mention that this is a common temporary mental incapcity?

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Nothing prior to surgery. Team says it's due to the lengthy stay at the hospital 4.5 months. It is temporary, but they never gave me time lines and I'm interested in how quickly others have improved.

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