Hello : Hello everyone! Just joined this... - British Liver Trust

British Liver Trust

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Gem2013
Gem2013

Hello everyone!

Just joined this site so working my way through things at the minute.

But thought I'd share a little bit about myself.

I have autoimmune hepatitis which was diagnosed in 1997. For years I have been on a low dose of azathioprine which I had no problems with and could live life petty normally. Then in 2015 my life became pretty stressful and I feel this triggered a flare up for my liver and thyroid, as I also have an underative thyroid. After been put on steroids my LFTs improved but had lots of side effects and other medical problems too. Eventually all settled and I continued on 5mg prednisolone. Then in April this year I began to feel unwell again and once again my liver function rocketed after yet another stressful time. The steroids didn't seem to be working as quickly and in was given IV steroids to speed things up. My LFTs are now coming down again but I'm feeling terrible from the side effects. My meds have been adjusted and hopefully I will start to feel better soon. I joined the forum as I feel it would be nice to know other people's experiences and have people who actually know what it's like to suffer with this disease.

Look forward to chatting with you soon

13 Replies
oldestnewest

Hi gem2013, welcome to the forum 😊. I'm sorry you're feeling so bad, I don't have any answers as I don't have aih, I think there are a few on here that have experience of it though and the steroids too,I'm sure they'll reply soon. Just wanted to say hello really. Xxx

Hello Stacey 33 thanks for taking time to say hello.

Hidden
Hidden in reply to Gem2013

Hi Gem. I can't help as I have no experience either but I would just like to say Hello I'm Laura 👍

Gem2013
Gem2013 in reply to Hidden

Hello Laura 009, thank you

Hi Gem, my hubby has cirrhosis due to AIH which was never discovered until it had done it's damage and in his case burned out.

If you do Facebook at all there is a fantastic Facebook group for AIH - it has over 1650 members all of whom are either AIH patients or loved ones of folks with the condition. It is a closed group so no one else on your Facebook will see your posts or anything from the group. The group is also supported by some of the top boffins in the UK who are treating AIH and/or researching the condition and each year they have get togethers in Birmingham and London where some of these top doctors and professors come along to give talks, answer questions etc. Group also has information folders on up to date research plus insurance folders etc. etc.

You'll find the support group page and a warm welcome from folks who know exactly what you are going through at:- facebook.com/groups/AIHorgUK

Best wishes,

Katie

Gem2013
Gem2013 in reply to AyrshireK

Hi Katie,

So sorry to hear your husband diagnosis took so long to be picked up. There so many stories I have read about how people have suffered for years before finding out what was wrong with them. I suppose I've been lucky really.

Thank you for this information. I'll be sure to have a look on Facebook at the group it sounds really interesting.

Kind regards

Sue

AyrshireK
AyrshireK in reply to Gem2013

My hubby had absolutely no clue his liver was ailing, he was totally fit, working really hard. Had a bit of a stressful time caring for Dad with dementia and wham April 2012 had a massive upper GI bleed and got diagnosed with late stage cirrhosis - never any of the 'usual' AIH symptoms yet that remains his diagnosis. Cirrhosis due to AIH.

Facebook group is really good.

Katie

Gem2013
Gem2013 in reply to AyrshireK

Hi Katie, I do think stress had alot to do with triggering underlying problems. I was the same looking after my mum with dementia. You don't realise how much emotional and physical stress it puts you under. Such a terrible illness for the suffer and there loved ones.

I've signed up to the group on FB and already chatting on there. Thanks again

Hello Gem, I am a newbie as from today also. I can't believe how many people are having big big problems Liver wise - non of my friends nor family have anything remotely like this and that makes one feel soooo isolated (they don't even know of my problem - only hubs).

I am on a couple of Forums, one is lovely and we are like a big family, the other one is horrible (that one is getting put into the sin bin for sure).

The guys on here are just amazing. I logged on this morning at 9 a.m - apart from breaking to go and buy my shopping and catching 30mins vit D in the sun :) I am still on here. I can't leave it and am reading everything. I don't know how long it has been up and running and only found it by chance yesterday. Wish I had found it a few years ago. Well welcome from one newbie to another :).

G.

Hi Gem, welcome from one newbie to another. I am sure you will get massive support on here. It is the best site ever (I am on another two but this one is just much much better.)

You are certainly having a tough time :( I have fatty liver, but no-one knows except my hubs. So I don't have anyone to chat with. Non of my friends or family have anything like this so it makes me feel really alone and scared.

I have been on here since 9am this morning, apart from a break to go and buy shopping and catching 30 mins Vit D rays :) The guys are so caring and professional, wish I had found it a few years ago.

Keep checking in - I will.

Kindest regards

G.

Sorry Gem, you have got two replies, my first one disappeared somewhere and told me to re-submit so I did and typed up another one.

G.

Gem2013
Gem2013 in reply to sunnysmile

Hi there

Thanks for taking the time to rewrite another message. Lovely to hear from another newbie. It can be quite isolating to suffer with something that many people know very little about. Hopefully this website will help.

Best wishes

Hidden
Hidden in reply to sunnysmile

Haha. That's happened to me too !

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