Anyone else affected with autoimmune hepatitis, and how do you deal with it?

[williediane]

[SarahKate-NRAS]

Hi Williediane

Hopefully someone will be along shortly to offer their experiences but in the meantime I have found a few links that I thought may be helpful. The first is to the information on autoimmune hepatitis from Patient.co.uk - a reliable website: patient.co.uk/health/Hepati...

They also suggest a couple of organisations who may be able to help further.

The British Liver Trust: britishlivertrust.org.uk/

Autoimmune Hepatitis Support Group: autoimmunehepatitis.co.uk/

Kind regards

Sarah Kate

NRAS

[Jane06]

I am!! I never thought I would find anyone else with the same conditions! My liver enzymes started to rise in August 2011 so I was advised to reduce my Methotrexate. I then started to get aches and pains - especially muscle pains in my arms. I was also having episodes of headaches and low grade fevers lasting several days. A few months later (about a year go), the enzymes went through the roof and they made me stop the Methotrexate completely. I was given a steroid injection which made me feel a whole lot better, and my Liver started to improve (not back to normal though). 3 months later - when the steroid injection had worn off - the liver enzymes shot up again. This proved to me (although the docs weren't convinced) that my liver problem was nothing to do with the Methotrexate - as I had been off it for months when my liver relapsed. I had another steroid injection, and started steroid tablets. Since about june last year, my liver has been completely normal. I have reduced the Prednisolone to 7.5mg daily. I would really like to know if there is a suitable drug to treat the RA and AIH at the same time. I am now on Enbrel for the RA, but the liver doc is talking about starting me on Azothiaprine for the AIH, to see if I can come off the steroids. I am not supposed to reduce them any more at present as I am only on a trial of Enbrel, so shouldn't make any changes until they can assess if it's worked or not. My RA was a whole lot better on Methotrexate, so I would be keen to go back on it if they would let me.

It would be great to hear your story!

Best wishes,

Jane.

[Cheryl67]

I've had AIH for the past 5 yrs(diagnosed) and have recently been diagnosed with RA. It's been hit and miss with meds, I'm now on mycophenalate & budesonide. Had 2 biopsies as well. AIH has caused lots of other problems with my health to say the least ! I have a great liver nurse and have direct contact with her, we even meet for a coffee and chat. Dealing with it can be hard as it's not a common condition and everyone is different but it's great to offer support and share tips/stories !! It also helps to have doctors/consultants that listen

[valeriesstory]

hi my names valerie i was diagnosed about a yr ago.. its a daily struggle but jus remnd urself ur not alone.. i have my good days an bad days some days i am full of energy an some i cant get outta bed/.. i also have RA.. on lots of meds my liver is doing much better then wen i was diagnosed im so thankfull..