Can anyone help I've been feeling rough now for quite a while after my L/T n had bloods taken which came back good , I get a bad stomach , tingling muscles tiredness etc I'm on 4 Mls prograf twice daily n also on azarhioprine 100 mg and I'm now wondering if the AZ is giving me these horrid sideeffects I've been in touch with the liver co who's trying to get me booked in with the liver doctor , I'm at my wits end with this , 4 months post op , I don't expect to be running but at least feeling at least abit better , cheers

22 Replies

  • Hi, I have very similar side effects, am also on 4 mg prograf twice a day & 500mg mycophenolate twice a day plus a lot of pain meds etc & all of them seem to have the same side effects, tingling, nausea etc. I am 15 mth post transplant & still very tired, I asked repeatedly about these problems & was told they they the side effects & should begin to subside. Which most have, especially the nausea. They had taken me of lansoprazole but left the aspirin which of course irritates the stomach so put me back on, which did help also had a course af anti emetic (sorry don't know if right spelling) which I still take on the odd occasion. I hope you get to see your consultant asap who can either put your mind at rest, so you nothing else going on or discuss a med change. On the plus side your bloods are good. ☺️

  • Thanks for the reply you've helped me loads sorry to hear your still struggling ,I don't want to sound selfish but I was hoping that I had a little more energy and you also it must be hard after 15 months , I feel for you .the side effects are doing me no good I feel rough 24 hrs a day I think it's the az so I will mention it when I'm in clinic , cheers for the reply keep on keeping on ))

  • No problem, I hope you find a solution so. I do remember the consultant saying it can take between a year & 2 to get back to somewhere near the health before you were it. Don't beat yourself up about it, small steps. They told me to keep diary & it amazing when you look back a couple of months how fare you have come. I could only manage a few steps when left hospital couldn't do stairs etc. Manage to get round house & stairs now with help on stairs, but that not because of liver that's spinal etc problems. Good luck

  • Hi it's not being selfish, we all hope for the same. Am sure you will get there, just give it time.

    I was adviced to keep diary, just generally how feel & what doing, not everyday, but when you look back it is surprising how you improve. When I was discharged I could only manage about four steps with help, couldn't stand up on my own n just forgot the stairs. I can now get round house on own holding onto things, crutches & wheelchair when outside, can get up on own sometimes, & sleeping (if can call it that!) upstairs, takes long time & lot of help, not every night, but thank my donor & family everyday.

    Take care

  • Azathioprine is a drug that suppresses your immune system, which for you will be to reduce the risk of you body rejecting the new liver. It doesn't suit everyone and can make you feel unwell, sometimes this shows in the bloods but sometimes it just makes people feel sick, be sick or get a skin rash. You could ask your docs to switch to something else, but then again the Prograf was the drug you thought was giving you the upset tum and other symptoms.

    It may be a case of continuing to tweak the immunosuppressants until the docs find one that suits your new liver and suits you.

  • Thanks bolly I thought it was my prograf but through investigation it looks more like the az, it's horrid the feeling of being tied , aches , stomach issues etc , I'll see clinic when I'm next there to see what can be done thanks have a good one ))

  • Yeah we have a number of people on the AIH forum who don't do well on Aza though it is the first line treatment. It can cause gastric upset and a number of other side effects and if they don't resolve people get put on a different drug. Trial and error I'm afraid, not a quick fix. Sorry you still feel crappy, TP not the golden ticket, pass go solution for everyone, poor Kimberley struggling a bit at the mo, back in hospital I believe with possible signs of rejection. More drug tweaking for her too!

  • Thanks for the quick response bolly I'll have a look on the forum )))

  • I don't think the AIH forum will be particularly useful in your case retwos, as you don't have AIH and there are not many with AIH who have transplants. You might just confuse yourself with symptoms that are AIH symptoms, not HCV/transplant/post TP symptoms, lol!

  • Retwos,

    About 3 months ago I suddenly started getting this horrible tingly/burning sensation on my thighs. It was bad and it made me feel so anxious. It has been 3 months and it is still there! Some days it is annoying and some days I manage it. Surprisingly when I walk I do not notice it and it is worse at night.

    Regarding pain, I have it around my ankles and the bone around there hurts a lot but it is slowly disappearing.

    I'm on 6mg prograf twice a day and 50mg aza.

    Let me know what your consultant says. Mine said that it should all slowly go away.

  • Thanks for the reply I'm at clinic tomorrow at QE I'll be tellin the doc my symptoms n see what they say , I've noticed my feet go very warm now as well n this is supposed to be recovery ! It's definatley a medicine problem hopefully they can change / reduce my meds to try n sort this out , may sound selfish but i need to start feeling better not worse , as all of us do , my minds there but my body is miles behind , keep smilin eh x

  • I know the feeling retwos. I feel the same post 8 months transplant. It only feels like yesterday to be honest. I'm still stuck in the time when I fell ill.

    It does get better however. I have gained my energy back so I do get to do my normal stuff. I try not doing anything too strenuous but I can walk a lot now. I do get tired now and then and some days I just do not want to move but with two little children, I can forget that. They keep me motivated :)

  • Seems my mind is sayin run but my body is not having none of it besides feeling rough the thing that gets me is I started getting really I'll a few years ago n I've two boys n to not be able to do stuff really cuts you up n now I'm still in the same place it's like life's just passin me by .i so want to do dad stuff with them n I thought I'd be doin at least some stuff besides in the house ,the meds play with your emotions to much so that doesn't help

    , but I'll try n smile as I know somewhere everything will be good , it's just when x

  • Retwos, you will get there. At four months I was still very weak and I had no appetite at all. It took me 8 weeks to start walking. How old are your boys? Your frustrations are understandable. I felt the same that life was passing me by and my children were growing. My son was under two then and it is only recently we started building a better bond. He was very close to me but because I was in hospital for a long time he drifted from me. He would much prefer to go to my sister in law who he was obsessed with and my mum who he rang rings around. Only now I can lift him even though I shouldn't because it takes a while for the internal stitches to heal but how long do you keep saying no? He is 2 now and he needs that love. I still haven't ventured out alone with any of my children because I feel I am not physically ready.

    Give it some more time. You have been through a life changing experience. Also the mood swings and emotions you feel are normal. That will slowly decrease too hopefully.

    You are entitled to feeling angry and upset and soon you will feel happy.

  • Retwos you probably know this already but on the BLT website there is a basic explanation of the functions the liver performs

    Your new liver has got to get into practice with performing these, and bear in mind you don't know how well it performed them for it previous owner! Maybe it didn't do the food into energy conversion well. Maybe it didn't do the glucose level control very well. Maybe it didn't store health giving vitamins very well.

    If you read some of the earlier posts on here from TP patients you will recognise many of the emotional reactions to such major surgery. Some liken it to Post Traumatic Stress Syndrome.

    I know you want to be up and running with your sons, but if you hadn't had the TP you might be in a worse position now. So baby steps, give it time. Instead of trying to run around playing football with them, how about spending time helping them read or do puzzles or board games so that you have quality time but are not needing to be super active.

  • Thank you for the help bolly I had a look n it's really helped me as you may have seen my doc has told me I'm anemic ! So on med for it n hopefully I will feel better n get on with my recovery x

  • Glad you have a diagnosis of the fatigue. If they have prescribed iron tablets, have they also explained these have a high chance of making you constipated and you may need something like lactulose to combat that. Also dont be surprised if your bowel movements (sorry if this is TMI) go quite dark, its the iron doing that.

  • Yeah I new you may get constipated I've got some Senna so I'm sorted there !! Just more trips to the bog ha ha n it going dark is something I've come across before , cheers for your words xx

  • Senna is horrible, gives you awful cramps.

    There are different kinds of laxatives, senna is a stimulant laxatives which works by stimulating the nerves that control the muscles lining your digestive tract.

    The gentler type are osmotic laxatives, such as lactulose or laxido which make your stools softer and easier to pass by increasing the amount of water in your bowels.

    As you are feeling pretty crap (oops, bad choice of words!) already I would favour lactulose over senna, as its gentler on your digestive tract and is the recommended laxative for those of us with liver disease.

  • Thanks bolly I'll be takin up your recommendation as when ever I've had Senna the cramps were really bad I think lactoloose will do the job better n thanks for your wit ( made me chukkle ) will be getting some of the sweet stuff instead 😀😀 thanks again x

  • Hope it works, just ensure nobody is down wind (ha ha) of you after the lactulose as it makes some people really really gassy.

  • I'll try my best !! X

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