Painful joints
Very lucky 6 months post transplant, h... - British Liver Trust
Very lucky 6 months post transplant, have very painful joints (all the main ones) anyone in similar situation?
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Lucky-scar
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16 Replies
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Hi I am 14 months post transplant and get aches all over most days some much worse than others, could be age of course (65).
I have had feed back and read it could be a side effect of anti rejection drugs, but not have any confirmation and have no comment from the consultant when I have asked
On bad days I take paracetamol, some day its not too bad.
Not much help, sorry but at least you are not alone
David
Lucky-scar in reply to
No very helpful. I have 10 years on you (55) and my consultant did suggest age related things like arthritis, seeing there was no signs before illness think it arrived to quickly to be age related. (Or I can't except age thing 
), thanks Simon.
Hi Lucky-star. I am now 9 months post transplant and as far as my new liver is concerned everything is going exceedingly well. I was very weak after transplant as I had been very ill for a quite a few years pre transplant. I had a couple of falls and ended up with 3 spinal fractures. I then had a bone density test and was diagnosed with Osteopenia. I have had continued back discomfort after the healing of the fractures. The last month or two I have been having hip pain and also pain in my left knee. I had Xrays 2 weeks ago and received a written report that states that I have Osteoarthritis in these joints. Have you seen your GP or liver specialist about the pains. I now know the reason for my pains but yours could be from something completely different and It's as well to get it checked out. Regards Alf
Thanks alfredthegreat. Hip things sounds familiar. Have had medical advice but no tests yet. It is early days so gonna grin and bear for time being. And let's be honest it's a small price to pay.
Hope your treatment goes well sounds like someone's kicking you when you're down Simon
Hi Simon. Like you, glad to be here to moan about the pains. LOL. Alf
Yes, yes, yes. Mine are now better although I do get very slight pain if I do certain movements. I am 2 wks shy of 2 yrs and the pain first started about 6 weeks post tp. My pain was in my hands and shoulders. I went for X-rays but nothing showed up. In the end my then specialist grudgingly agreed that it might be the Tac or cellcept. He changed the cellcept to myfortic which did nothing and suggests it was the Tac. I used to be unable to turn the key in the lock, do up my bra or put on my socks. Slowly it got better, however things like using scissors a lot or a long drive will bring it back or a few hrs. I don’t know why it hurts less, is it that the brain gets used to the pain and ignores it. I don’t know.
At the time it really used to get me down and the bad symptoms lasted for about a year but it did get better. Please believe me, it will pass. If you look at the first question I ever asked on here it was about Tac and pain. I was given the same answer by someone and he was right. It does eventually die down.
Good luck
Isabelle xx
Cheers Isabelle 2. It's great to know it's not me making a fuss although your pain seems more to do with smaller joints it sounds related. As for pain I think all of us in this condition have suffered enough of that to be mini experts!! Thanks Simon
I’m 54 and do have arthritis in my knees.
I know it’s a nuisance and your not mad, I am persuaded it is tac related.
Izzy x
Hi Izzy. Liking your input:). Just skimmed your story all sounds very familiar. I'm with you the coincident of of pain op and drugs can't be ignored. Patience and give it a bit more time is my new motto. I think mentally coping with pain becomes easier. Si
Yes hubby did about 6 months in he was put back on a low dose of steroids because they thought he had been taken off them too quickly, he is off them now, as they reduce them right down to half a tablet before stopping them all together
Seems a common problem, but your the first to mention medical intervention. Thanks and I'll certainly mention it in my next consultation. Cheers Simon.
Hubby is 43 & he didn't have any joint pain prior to transplant just a bit of sciatica in his lower back due to a chef injury (cage fell on him). We made the 1 year post tx milestone in 12th May. Not back to work yet as he still suffers with fatigue due to being ill for 3 years & suffering with bad muscle wastage and part of whole illness, but goes to the gym 5 days a week to build it up. The gp set this up for him as part of rehab
A long period of time with limited exorcise must have adverse effect on fitness generally. What I've picked up on is a relationship between transplant and relative drug treatment and the development of joint pain. This on top of usual fatigue from such a major physical upheaval. Gym sounds like good combat. Thanks Simon
Hi Simon and all,
I've not had a transplant, but since leaving hospital after liver and kidney damage my knees have been extremely painful. Arthritis runs in the family - it feels like I've been catapulted forward a decade... I also have swollen ankles and my leg muscles are sometimes sore. In terms of drugs, I only have thiamine and lansoprazole that are new, plus meds for blood pressure and anxiety from way back. Anyway, I'm back with my GP next week, so will raise it then. The hepatologist wouldn't comment on any side effects; only the liver itself. Hot water bottles seem to help a bit, though...
Best wishes
Sorry not much help can only confirm how similar your and my situation is. Simon
