Diagnosed with AIH and Grade 6 cirrhosis 2 months ago and learning to cope

Hey guys just a quick question.. I've been home now from the hospital about a month after a month of being in hospital with liver failure. Gone from 80mg of pred to 20 by now and managing a lot better. Have gallstones too but they said too weak now to have gallbladder removed. On a strict diet and looking after myself well However still get panicky with every flare up and symptom.

Spent like a week in bed with some horrid flu type virus which has nearly disappeared now except still a bit mucusy and taking nystatin and Gaviscon for mouth thush and pain swallowing (as doctors recommended and prescribed insisting it's unlikely to be thyroid or anything else serious)

Noticed right side back pain yesterday all day then woken this morning with a sharp pain in my middle abdomen under ribs and right side back pain has spread to the middle which is quite sharp.

Anyone know if this is signs of something more serious and can be prevented early? Or am I just being paranoid and I should be strong and get used to the ups and downs and flare ups. Is it just a bad day?

5 Replies

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  • Hi Xena 2017,

    I also have AIH, but I don't recall having any of these types of pain, but it is 8 years since I was diagnosed. However, I do know that many of the people on my Facebook page do suffer from these types of pain and so it seems to be not uncommon. If you haven't already joined, then do think about joining (the Facebook AIH group) as there will be people on there more recently diagnosed than me who may be able to reassure you. The group is AIHorgUK.

    All the best :)

  • Thanks but I don't like that group. Removed myself about a month ago. Anyway pains are gone I'm ok lol. Thanks again

  • Whoops! Did recall someone had posted that the other day. Sorry didn't realise it was you. Glad you're felling better. If you talk to any of the doctors/consultants they will tell you that there is no medical reason for any pain emanating from the liver. I have been told that personally and i know others have been too. Until you get used to the meds and your body is settled, it is difficult to know what is normal for you and what should concern you. I find the best thing to do is keep a mental note of it or an actual note in a day to day diary. That way you might see a pattern and also if you have to go to the docs about anything, you will be able to be precise about how long and often these sorts of things have occurred. :)

  • strange but interesting question,have had similar thoughts the reason that keeps me going is the hurt it would cause my family,probaly deserve having cirhosis due to all my partying,no friends,no sex drive,no sleep,encelopathy,ataxia,painful joints and worse of all no sleep,what the hell you gotta try to keep on smiling,thats after the variosie bleeds and ascities,got taken of transplant list so not all bad news.

    blue-moon-1

  • Hi Zena 2017 how are you feeling now just read you had a flu type bug it's awful isn't it when you have a flare makes you feel so ill dosent it, I've been having weird pressure like pains under left rib almost like something is under my rib,-at first I thought it was muscular but don't ever remember twisting and hurting myself. I will have to get myself on the facebook aIH forum but to be honest I'm not really into facebook I prefer to speak to ppl on here hope you are feeling better

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