Well, tomorrow is d_day. I had my third liver biopsy on 16 July and should get the results tomorrow. I am expecting a resumption of steroids and an increase in azathioprine. I have only been off steroids since March, having been on them solidly since diagnosis in September 2013. I have only lost a stone of the two stone the drugs made me gain. My skin has barely recovered from steroid damage,and I may never recover from having developed fibromyalgia due to the steroids buggering up my sleep!! I could so do with them saying it's all a mistake and the fibroscan was inaccurate!!

Well it's been months since I last wrote this. Things had been going well. My liver blood tests have been in normal range for months, and I have finally learnt to accept this disease, and all that goes with it. I have also been diagnosed with fibromyalgia....but that's another story. Today I saw my consultant and had the rug pulled out from under my feet. I had thought that if my bloods were in range then no more damage to my liver was occurring. What I hadn't realised (or ever been told) was that all the bloods show is how well the liver is functioning. They do not show what damage is being done to the liver itself. However, having a fibroscan does show whether or not fibrosis is present. A normal healthy liver should not score above 4, mine scores between 9-11. This means I have fibrosis, and will now have to have another liver biopsy to see the extent of the dammage.
I feel like all my markers I have been following are gone. The bloods do not tell the whole story, I feel conned and confused. I also feel terrified of the biopsy as the last one was so painful. If the biopsy shows what the consultant suspects, then she will begin to treat me far more aggressively. This means my Azathioprine will be increased.....the drug I hate most with the most side effects.....