Hi everyone. I am so pleased that the British Liver Trust has joined the HealthUnlocked community. I have been a member of the PBC Foundation community for the last couple of months and have found the members to be a great source of support and knowledge. It's so nice to correspond with people who understand.
However, I feel that I need to speak to people who have the AIH problem as well as the treatment is very different from the PBC although most of the symptoms are similar for both. I find it very frustrating that there seems to be no black and white answers to questions relating to these conditions.
My story in a nut shell:-
* I am a 47yr old female who was diagnosed with AIH/PBC overlap syndrome or is it PBC/AIH overlap syndrome in May 2011. Not sure what is the correct terminology? The only thing I do know is that on my last visit the consultant told me that the AIH was driving my prognosis and not to worry too much about the PBC.
* I am AMA Negative (diagnostic for PBC) and SMA Positive (diagnostic for AIH).
* I had a liver biopsy last year which came back positive for PBC but no mention of AIH although my LFT's were indicitive of AIH. Soooo confusing! Nothing with me is every straight forward. (Point of interest - my mum had PBC and her older sister was also diagnosed with PBC.
* I have an underactive thyroid (medication Levothyroxine) and Vitiligo (both diagnosed in May 2005). I have AIH/PBC overlap syndrome (medication Budenofalk steroid, Azathioprine, Urso & Omeprazole) (diagnosed in May 2011) = 4 autoimmune conditions. I also suffer from migraines (medication Atenalol). Basically I rattle !
* My LFT's have been as high as ALT-651 & AST-278 but are now normal ALT-27 & AST-18.
* Symptoms on diagnosis were Flushes, Restless Legs, Disturbed Sleep, Weight Gain & Fatigue - all very general but I was told that if I had gone undiagnosed with the AIH and did not receive treatment I could have been dead in 3-4 years! Makes it all really real!
* I was also told at the same time as my diagnosis in May 2011 for the AIH/PBC that I was officially in the menopause! Hormones have a lot to answer for although they do not know what triggers the AIH/PBC overlap syndrome but I think hormomes might have something to do with it?
I am really lucky that I do not have the itch that so many other people have but I do find the fatigue a nigthmare at times. I just seem to hit a brick wall every so often and need to sleep. Sometimes I need a wee nap in the afternoon! God I sound like an old lady! I try and pace myself and listen to my body and that seems to help me cope. I also get aching, cold, tired legs and arms from time to time (more recent thing).
On a more positive note, I am doing fine at the moment and remain positive. I refuse to be a victim and wish you all well. Keep as well as you can. You only get one life so try and make the most of it, I do. I look forward to hearing from you all in the not too distant future about your tips and experiences. x
Questions about Cirrhosis Prognosis
