Came home this afternoon. Have started 60 mg pred today, feel so unwell that I don't know if its that or just the whole hosp/biopsy experience. The biopsy was so much more painful this time, really wasn't expecting it to hurt too much, but it did. The only good thing is that its short lived pain, but it has left me quite sore and needing pain relief which I didn't last time. Fasting blood glucose was ok, so only low sugar/sensible diet for now. More bloods taken before discharge, and further ones to be done Monday. Then back to see Prof on Weds 5th next week for all results. Think the plan is to try the Azathioprine again in a few weeks. Have come home to letter from work asking me to attend formal meeting with manager/HR re sickness. Meeting on 20th and can take RCN rep, so will have to get on that Monday. Also, have been "awarded" the great weekly sum of £72.00 (employment support allowance) from 26th March in recognition of having worked and paid my taxes every month since I was 18yrs........so nice to have your contribution to society recognised in such a generous way... I'm sure that equals my salary...............

Feel very unwell. Exhausted, headache for days, liver area swollen and uncomfortable, miserable, appetite down (think liver pressing on stomach), cramp and vague nausea. Feel unable to function properly, really slowed down and everything a serious effort.Anxious re tomorrow. Don't know why, as Iv'e had it before, will be glad when its over and results are in. Early night I think.

In my wisdom (and impatience) I decided to ring the hosp this afternoon to see if they might know which day I would be going in. Was told (in no uncertain terms by the booking clerk) it would not be this week or next and the Proff had no right to let me believe it would be! There would be no beds for some time, and they were currently making appointments for APRIL!!!! Tried to explain that he was quite specific that he wanted me in this week and was seeing me next week to give results. She was having none of it. Is it just me, or do others have this problem with admin staff in the NHS? Can't fault clinical staff, but have had serious stressful times with appointment booking. Every Monday I'm seen in clinic, they say they want me to be seen the following Monday. Every Monday, I take my slip of paper to the desk after seeing the consultant and ask (as instructed) for an appt the following Monday, and every time, they say we are full, and can't fit you in................stress you don't need when you are trying to cope with illness.

Anyway, after a lengthy discussion that went something like
Me   "April.....I could be dead by then!"
Her  "It doesn't say that on this bit of paper"       we agreed that she would contact the proff to see where we go from here. Withing 1 hour, she rang back, and I have a bed on Thursday after all. The question is, what would have happened if a) I hadn't rung b) I had accepted what she said?
Am shattered and off to bed

Saw Proff Cramp this afternoon.  Things are not good. ALT stubbornly rising and now at 456. He wants to admit me asap this week when a bed is available to repeat the liver biopsy. He thinks this is a flare of the AIH and probably not due to anything else. Viral screens were clear. Over the weekend, I also developed glucose in my urine, so am now looking at probable steroid induced diabetes. He will do a fasting blood sugar when I'm admitted, but today, BM was only 6.9mmol (little high, but not too bad).The good news is, he is confident that this will settle once the AIH is under control and the steroids are reduced. Terrifyingly, he wants to increase the steroids to at least 60mg after the biopsy. I can barely function mentally on 30mg, and my brain turns to mush on 40mg, God knows how this will affect me but there is no choice. He wants to see the level of scarring on my liver, as it was quite marked when I had the biopsy last September. On a VERY positive note, he offered to write to my managers/occ health/HR whoever, to explain prognosis/management etc. He is confident that he will get this sorted in time. So , am feeling all mixed up with positives and negatives, and await the call for admission. He will see me again on Weds 5th March with results.

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.