Have been really struggling this last few weeks with tiredness, but today, although it didn't start too well, I have definitely had a little more energy. Have managed a dog walk this morning, and a few chores, and the donkey care this afternoon. Even managed to pick our first daffs from the field edge (before the donkeys trash them!) Oo and a friend texted to say she had made me a bannoffee pie......collected VERY quickly and looking forward to unhealthy diet later.......well at least there are bananas in it! Have no idea what bloods are like, but lots of discomfort in liver area. Bloods tomorrow, results Monday. Will just keep eating till then...

Seen in clinic this afternoon. Pred reduced to 30mg as it doesn't seem to be doing anything useful anyway! More bloods taken including a viral screen. results of that will take at least a week. More bloods on Friday, back to clinic Monday next week..................and so it goes on...........No nearer knowing whats happening, but remain shattered and without any stamina. Joints aching, brain not working, stomach constantly demanding to be fed. Biopsy looming methinks. Very fed up with it all.

Oh dear! Bloods done this morning, and wasn't expecting results until clinic on Monday. However, consultant rang at 6.30pm to say they are still rising and now well on the way to 400 (ALT) AST not in yet. She wants me to continue with 40 mg pred until Monday, when she will do bloods again and some further tests. She is now wondering if its a virus I've picked up that is causing this................call my cynical............but that's what they thought in August!! If not, then probable repeat liver biopsy. Stuffed my face with cheesecake........would like to say I feel better........but now have indigestion. I did, however, try healthy Greek yogurt at lunchtime (0% fat)...so am sort of trying. Weight going up as fast as liver enzymes. Do I look like I'm bovvered??
Seriously, am feeling very anxious about this.

Really crap day yesterday.........went to bed and felt sorry for myself. Picked up a bit towards evening. Slept fairly well (some Scottish guy in my earphones telling me to "Go to sleep")! Up and at em early with determination to be more positive. Found this challenging but managed to get most things done albeit at a slow pace. Spoke to my gp who has signed me off for a further 4 weeks as expected. Feel rather resigned to becoming less able and trying hard to accept that. Bit spaced out at times (steroids or condition?) tired all the time and no stamina. Taking 20 minutes to recover from simple activity before doing the next thing. Ate loads of healthy veg tonight to make up for all the biscuits/ cheesecake and last nights midnight cheese toastie............aghh

Bad news. Consultant rang an hour ago to say that the bloods were worse again. They don't know whats set all this off or why the steroids aren't working, but have now increased the pred to 40 mg daily from tomorrow. I'm so fed up. I won't be going back to work next week after all, and fear I will now lose my job. More bloods again Friday and back to clinic on Monday. I hate not being able to plan anything or know what the future will hold. It's all out of my control and there seems to be nothing I can do about it. Healthy veg/fruit/nut/juice diet out the window in favour of cheesecake/biscuits/cakes and all things steroids demand. Skin appalling, weight increased, joints and URQ pain. No stamina or energy despite steroids. Want to stamp my feet and have a tantrum

Whaoo.........tiny improvement in blood levels! AST 169 ALT 232. Still high but at least no worse. To stay on 30mg pred daily over the weekend and review at hosp on Monday afternoon. Can't say I feel any better, in fact seem more tired and have no stamina at all. Tried a dog walk this morning and really suffered for it. Appetite far too good (have put on a few pounds) little nausea, joints not as bad, but cramp in toes has returned. Was hoping to feel ecstatic about bloods, but for some reason still feel very flat and unsure. Will try to take it easy over the weekend.
Complete mud bath here in Cornwall, donkeys fed up and older one has rain scald (which bizarrely is responding well to sudocrem). Will update after clinic Monday. Thanks for all good wishes

It hasn't got any easier and in fact, much worse. I knew the steroid increase wasn't working as I neared the end of the week and wasn't feeling any more energised. In fact, the ALT that was done on Friday, was at 243(normal range 7-56) and the AST risen to 192(normal range 5-40). This is hugely disappointing. Seen at hosp this afternoon, and they have stopped the mycophenolate in case this is causing the rise. Steroids have been increased again to 30mg daily and I now have alendronic acid added to the mix once a week to protect my bones from the steroids. Bloods are to be redone on Thursday this week and then further decisions made. They may do a further liver biopsy to see whats going on. At present, I am falling into the "30% of difficult to stabilise patients". Apparently, they should have been only seeing me every 3 months by now.
As far as work goes, I have surrendered and been signed off again, I am just too unwell to function properly. I don't know what the future holds or if I will lose the job I love. Feel like a complete failure, but don't have any reserves left to call on.