Seen in clinic today. Bloods remain just about in normal range. They have agreed a very gradual reduction in steroids from tomorrow. Going down by only 1mg per day for one week at a time. To be seen again after more bloods in 4 weeks. Also to be referred for another scan to check all is well in the liver/pancreas area. If this shows any problems, then for an endoscopy to check for complications such as portal hypertension/varices etc. which is not uncommon with this condition. Am having a consultation at the nuffied on Weds to see if the spider nevi can be lasered.....hepatologist not keen as she thinks they will just return due to the condition being chronic...and this would be a waste of money. Have tried to expain about self esteem and how when I look in the mirror I no longer recognise myself. She felt that self esteem might be worse if the spider nevi returned after having had treatment. We agreed I would have the consult, but not proceed with treatment before feeding back to her. For her part, she will research the benefits/ success of treatment for people with  chronic liver disease.

Had my first bone scan today after 13mths of steroids. For once, it appears to be good news, and the steroids haven't caused too much dammage to my bone density. Am still really struggling with stamina and having to go back to bed for a few hours most days. Must be down to the condition as bloods were normal last week.

Clinic today. Bloods now normal....shame I feel anything but normal. They seemed keen to consider increasing the Azathioprine, to see if I could reduce the steroids. The rationale is that as it is prescribed according to bodyweight.... now I'm 8kg heavier (thanks to the steroids) it could be increased and potentially be more effective. So basically, they give me a drug to make me fat in order to increase the other horribly toxic drug. If I hadn't been made so fat it wouldn't be necessary. Not sure how much more of this shit I can take. Despite bloods being normal, I'm to stay on 10mg pred for another 2 weeks....just to be sure. I have asked them to consider budesonide as an alternative to the pred (less side effect and more expensive, so better for me but not the NHS)..they're not keen