Post transplant aches and pains - British Liver Trust

British Liver Trust

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Post transplant aches and pains

Bgc58 profile image

Good afternoon everybody,

 

I am 7 months post transplant and recently posted on here a few months ago about fatigue after transplant. Well the fatigue issue is slightly better and don’t find myself quite so out of breath when walking. One thing is hindering me though, I am walking everyday but when sciatica kicks in that’s it, I hobble back home to rest. Some days are better than others and I am even able to mow the lawn and potter about the garden some days and I’m slowly replacing old decking and wheelbarrowing stones up and down the garden. However I am doing this mostly in pain and some days I just have to put my feet up. I’m having physio and am doing the exercises. The problem is that every morning I wake up with a painful lower back (above both hips) and aching thighs. For the last month or so stiff hands and fingers as well. It’s always painful to get up out of chair or bed but once I’m walking it eases off. I’ve had xrays and MRI scans but nothing is obviously out of place, only excessive wear and tear on lumber vertebrae from years of playing rugby. I’m seeing an orthopaedic anaesthetist in August to see if steroid injections may help. I’m not sure if this is transplant related or a normal back problem. Anybody else had these aching joints post transplant ?

 

17 Replies

I am 11 months post transplant and yes, as I have increased my physical activity, the aches come with it.

I was diagnosed over 4 years ago and put it down to doing things that I haven’t been able for a long time. Walking the dog, gardening, cleaning etc. But I remind myself that doing the simple things are now a real pleasure.

I did discuss it with my Heptologist and we agreed that it’s down to the increase in activity.

Good luck with the back and everything else, it’s a long journey but worth everyday.

Mark.

Bgc58 profile image
Bgc58 in reply to TT-2018

Thanks Mark, it’s good to hear this from somebody else and I agree with your outlook on things post transplant.

Hi there the aching joints maybe down to your tac. I’m roughly five months and it’s been a slow process trying to get my fitness back and at times wonder if I will .however im not sleeping in the day like I was and from the first week were I’d get so out of breath just lifting an arm above my head I’ve improved lots.as they say it depends on how Ill your were as well as age and fitness just before transplant.but sorry your in pain and wish you well.paul

Bgc58 profile image
Bgc58 in reply to Popel

Hi Paul, thanks for the replay. I’m not sleeping as much during the day now but still enjoy the odd nap. I realise now it’s a long journey back. Do you know what is a good tac level ? I’m on 7mg Adragraf and I believe my tac level is steady at 5 point something.

jojokarak profile image
jojokarak in reply to Bgc58

Tac levels are different for each person but usually between 5-12

I am on the same med as you but I on 4 mg but I on steroids as well

I have aches and pains most days and I have been diagnosed with bursitis in most of my joints which causes a radiating pain down most of my limbs

Popel profile image
Popel in reply to Bgc58

Hi there I’m in prograf and I’m down to nine mg a day at five months and have a tac level of 4.5 .im sure you’ll improve well I’m hoping so because im only a few months behind you and it won’t bode well for me😬 paul

Bgc58 - it sounds like an impressive achievement, your activities 7 months after transplant. Can I ask, does your medical team check Vitamin D levels pre or post tx? If not, and if you are not supplementing, it would be likely that they are fairly low especially given the time of year that you were transplanted. I don't personally know anyone who has had a transplant. For all I know it may be one of the important details that would never go overlooked. But it surprised me how quickly my bone pain and fatigue reduced after my Vitamin D levels were topped up. It was just a thought. I appreciate you sharing how you are improving and what effort you are putting in to get there. I hope you are kind to yourself, and rest as much as you need to. Best wishes

Bgc58 profile image
Bgc58 in reply to

Hi, I was prescribed magnesium supplement about 2 months ago but only for a month. I’m having blood tests next Monday. I’ll make a point of checking vitamin D levels , thanks

jojokarak profile image
jojokarak in reply to Bgc58

They check vitamin d levels automatically

in reply to jojokarak

jojokarak - thank you! Were you taking supplements at the time, or were they prescribed for you after testing, or neither?

jojokarak profile image
jojokarak in reply to

I was given vitamin d straight after transplant they are called calceos chewable tablets and I still on them now x

in reply to jojokarak

jojokarak - Respect! I tried the chewables. Couldn't do it easily, dreaded taking them and it was constipating if I did. I use oral spray now. I do have absorption problems from gut so it's for the best anyway. I'm pleased the chewies work for you.

jojokarak profile image
jojokarak in reply to

Well if you're on a spray it definitely won't be vitamin d problems as I say they will check your levels automatically... I hope you improve as time goes on

Bgc58 profile image
Bgc58 in reply to jojokarak

I know it’s not advisable to take home remedies post transplant but what about these turmeric supplements that are very popular at the moment, anybody used these and are they safe ?

jojokarak profile image
jojokarak in reply to Bgc58

We're not allowed to take any herbal remedies without double checking with the transplant hospital x

Hi

I have lots of aches and pains still at 14months post TP

By the end of the day I sit down for 5 minutes can hardly move, but it is slowly getting better the more I do

It properly to be expected after 7 years of very little activity

Consultant tested for vitamin D etc and no problem. I am taking it as a thing that I have to work on and get fitter

David

Bgc58 profile image
Bgc58 in reply to david5354

It seems I’m not the only one feeling this way, I was getting worried liver wasn’t work properly. I discussed it with hepatologist at last appointment and he said give it time as blood levels were good. He did send me for an ultrasound though and I’ll get results next week at next appointment.

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