Hi everyone sorry not been on in a while but so much has happened over the last few months. I have just come to realise that I am out on my own with this. I have AIH/PBC overlap and it is now over a year since I saw a consultant. My consultant left the NHS to go back to Australia and it seems that either they have not found a replacement yet, or they have just completely forgotten about me. My Gp don't really know how to treat me for even the smallest thing and am often left to my own divices if I am unwell with anything.
I don't know what to do. I could try once againg to ring gastro and ask if there is anyone I can see, bearing in mind my GP has already tried to get me an appointment (pinderfields) is the hospital I have been going to. I do know there is a liver unit in Leeds and am now thinking that this may be a better option for me.
I am still on 5mg prednisolone because I tried to drop it lower and had some became unwell, my LFTs are now in mid range and should be lower range because of the AIH, I also am taking mercaptopurine because they thought I was sensitive to azathioprine because I had a virus and they though it was the medication (caught virus from friend). Mercaptopurine is a chemotherapy drug so you can imagine the affect this is having on my body (2 years now).
When I tried to lower the pred I has symptoms I did not recognise to be from AIH or PBC at first then the pain kicked in so went back on to 5 mg again. I am losing body hair and the hair on my hed seems to be getting thinner. I am just really fed up and want to be back to normal or rather as normal as I could be with these diseases.
I just feel I am on my own with it and it really gets me dowm some days, the fatigue and joint pain are the worst followed by gastric upsets, and the odd itchy night.