Seen in clinic this afternoon. Went with a feeling that all was not well, as I have still been so tired and lots of liver area discomfort. Sure enough, the blood levels have stalled at AST 69 and ALT 91. At least they are no worse, but I was so hoping for a reduction in the pred today. Instead, I have to stay on 30mg. He has restarted a small dose of Azathioprine 25mg. Bloods again Friday and back to clinic next Monday. Says he will ring Friday if bloods are worse and increase pred again if necessary. I am so fed up of this. My patience is running out. Seven months and no further forward. Still getting loads of cramp so he has also restarted the phosphate sandoz as levels are very low and requested vit D blood test to see if thats the cause. Good intentions for healthy/low sugar diet are out the window and weight increasing, face fat and hairy.....mood miserable.

Had planned meeting at work this morning. All went well, and they were very supportive/understanding. Will basically remain off sick until the beginning of July at the earliest. We have to meet again to review things the first week in May, but the plan (if all continues to go well) is for a phased return in July . They will make reasonable adjustments such as changing my base (so I do less driving) and reducing hours etc should I need to. Felt very sorry for my manager, who is struggling to provide cover for my area, but unable to advertise my post. There is a case list of approx 150 people without an adequate service due to me being off sick. The situation is far from ideal, but I don't want to go back too soon and disrupt everything again should it not work out. Came away relieved that the pressure is off for 3 months, but utterly exhausted from the drive and the anxiety of the morning. Slept for 2 hours this afternoon and felt much better.
Appetite terrifyingly good..........weight gain.........aghh!!

seen in clinic. Pred to stay at 30mg for now. Bloods AST60 ALT 90..so still going the right way. They dont want to start aza yet until they are sure things are definately under control. So bloods again Friday and back to hosp next monday. Saw the optician today....thanks to steroids, I now have raised inter occular pressure so will now be under the eye hosp aswell!!! Feel tired and headachy (optician thinks headaches are due to raised pressure). Meeting with work tomorrow, Proff Cramp has written a very supportive and positive letter for me to take, so fingers crossed that they can continue to be patient.

Good news...........the donkeys like my plan! Also, stuck to having a sleep this afternoon, after having a normal/busy morning. Reduced pred to 30mg today, have been on 30 and above for 7 weeks now, hoping to get lower asap, but am now getting headaches I guess from the reduction.....oh well can't have everything. Appetite has gone crazy, and was eating lemon tart at 11pm last night (had already had a whopping dinner and a portion of tart at 6pm). Face has gone very moon shaped, and the rest of me refuses to fit in my jeans.

Chased up the consultant through the secretary this morning. He rang back within an hour and said the bloods were still going the right way! So.....can reduce pred to 30mg from tomorrow morning. More bloods as planned tomorrow (which won't reflect the reduction in pred now, as it could have been reduced on Weds morning!) Clinic Monday. Also had to chase Monday's appt again as it hadn't been booked. Then , have had to chase the letter that Proff Cramp said he would write for next Tuesday's meeting at work, as this has not been done either.....aghhhh!!!!!
Latest plan.............am not going to ask for "special leave" yet. Will see what they plan, then try to negotiate part time return to work in July at absolute earliest. Here's hoping they will agree.
Busy morning, but made myself have a rest this afternoon for a couple of hours. If I can get into a routine of being active in the morning, then having a rest, there is no reason why I couldn't work 4 mornings a week rather than three full days is there?? Anyway, rain is now hammering down, guess spring is over, off to see donks and see what they think of the plan

Latest results were supposed to be phoned yesterday.....still waiting. Have been doing far too much I think, resulting in waking feeling like I'd been run over this morning. I guess not having an afternoon rest for three days does have an effect after all. Had an hour this afternoon and it was enough to keep going. Will make it a priority again from tomorrow............

Seen in clinic as planned. Have had a busy weekend and was feeling decidedly wrecked today........achy joints, cramp all the usual crap. Anyway, the consultant was lovely, and decided he wanted more bloods doing while I was there (veins begging for mercy, approx 35 blood tests since last Sept) He will ring with results tomorrow, and if still going down, will reduce pred a bit more ...yaay! Asked him to give a suggestion about how long he thought getting really safely stable might take......he thinks 3-6months , 6 to be safe. The thing is, I NEED to work out what the hell I'm going to do about work. I don't want to go back and fail again. It's so disruptive for everyone and soul destroying for me. I'm considering asking work for an "unpaid special leave" where my job would be kept open, but pressure off, and wanted to know how much time to ask for. They might refuse of course. It would just give us all a bit more of an idea about how stable I can get. I know there will always be the risk of flares and I know no one can really be sure, I just think that it might be good to "surrender with permission" so to speak, and give myself time to recover as best I can. Any opinions??
Have to have bloods again on Friday then back to clinic Monday. he wants to start Aza again but only 25mg initially. Stomach much improved on omeprazole 20mg bd. Phosphorous increased for cramp!

HOORAY!! Consultant rang at 6pm to say that this mornings bloods have shown further improvement. ALT 124 AST 70. He said I could reduce the pred to 40mg from tomorrow, have a good weekend and he'll see me Monday!Nearly  died when he started by saying "I've had a look at your results from today"....couldn't believe it was good news.Feeling so much better knowing the results tonight rather than the usual build up to Monday afternoon.
Also had a phone consult with the RCN as planned today. We have some ideas/plans/suggestions to put to the Trust for the meeting on 25th, so feel better about that too. Actually really love my job and need to find a way of keeping it if at all possible.
Still lots of physical stuff going on, but the end may be in sight now.
Colleen, great news about your work! You made it, and enjoyed it! So sorry that you have had to pay for it by being so unwell. But as you say, maybe this is just how its going to be. Get some rest before you do it all again next week!! x

Feeling a bit better the last 2 days. Stomach much preferring the omeprazole twice a day, and seem to have better appetite (whoops....small bannoffee pie consumed tonight) Have managed to be a bit busier, though remain tired in the afternoon and have needed a nap. Brain fog slightly improved also. Could things finally be turning the corner? I hardly dare hope.

Sorry I haven't posted for a while. Mixture of being busy, enjoying spring weather and just not feeling like it. Thanks for all good wishes about today. I saw consultant this afternoon and thank God, the bloods are finally beginning to move in the right direction. However, I was hoping to feel thrilled about this, but instead burst into tears when he said the pred had to stay at 60mg. I am desperate for it to be reduced. Instead of feeling manic and well, I just feel like my body can't take anymore. My appearance is changing. I don't like what I see in the mirror or how I am feeling.I have glucose in my urine (possible implications terrify me). Everyday is a constant struggle to put on a face and pretend things are fine. My stomach has taken a beating over the last week from the steroids, waking me at 5-.30 in pain, despite increasing omeprazole. On Saturday morning i was due to take the alendronic acid, but was too scared to as me stomach was so sore. That then increases my anxiety regarding bone damage. Everything impacts on everything else and there seems no way of managing this. I feel out of control and tearful much of the time (and of course that is another side effect of the steroids)! I have liver discomfort most of the time, and clothes don't fit comfortably.Consultant was lovely and supportive when I tried to explain that I really do understand the importance of the high dose steroid, but it is MY body thats being put through this and I just want it to end. He agreed to drop the pred to 50mg, take omeprazole morning and evening (instead of just morning) added the potassium again( as my hands and feet are in constant cramp) and will see me (after more bloods) next Monday.  Proff has written a letter for me to take to the meeting at work on 25th. They plan to reintroduce the Azathioprine in the next 2-3 weeks very slowly, and try again to stabilise me on that.
Colleen, please tell us how it went on Saturday, have been thinking of you and REALLY hope it was ok.

Seen in clinic. Bloods still high (over 300) but tiny reduction since increased pred last week. have to stay on 60mg for now and have bloods redone Friday then clinic again on Monday 10th. Biopsy appeared to be no worse since done last September, but showed this is a flare of the AIH not a reaction to the drugs I was on. relived things are no worse, but would have liked a bigger drop in bloods!! Lots of Liver/stomach discomfort, so omeprazole increased to 40mg daily.

Irrationaly anxious about results tomorrow. Still in a lot of discomfort and tired all the time. Have also now got to attend a meeting with work on 25th to discuss my absence. RCN have been brilliant and will attend. have spent the day photocopying and gathering all the letters/job description/contract/chronology of events as requested by them. Am going to ask Prof to write something re prognosis etc. feels like going into battle, and could do without stress. Also SSP runs out on 27th March, so have to provide a load of stuff for benefits people and have some sort of medical in order to get ESA from then on. The most benefit I will get is £72 per week...................that equals my salary...........NOT!!!! How P.... off are we all that we don't even qualify for free prescriptions???? Other life long conditions that require eternal medication do....but not AIH apparently. The world feels such a fair and balanced place sometimes doesn't it?

Just beginning to feel a bit more human now. Thanks for all the good wishes. Found myself in a bed next to another girl with AIH also under Prof Cramp! That was the real positive for me, to actually have a chance to chat with someone who understands the condition..........and someone who was really positive and happy to be in touch, and who lives in Cornwall! Came home and pretty much straight to bed on Friday. Felt very sore and unwell, and hadn't really expected to. Interesting that everyone then tells me the first biopsy is ok then they tend to get worse!!!! Anyway, all over now, and awaiting results. Spent a quiet, spoilt day with my Mum supporting me yesterday which was lovely, and the sun was shining..............not so today, we have returned to a mud bath and Donks NOT happy. have managed to do a little more today, but still a bit tender and not wanting to lift/bend etc. Now on 60mg pred daily since Friday, and feel a bit peculiar, and unsure about driving as a result...so haven't yet. Appetite still a bit down, wanting little and often rather than a big meal. Still have glucose off the scale in urine, but Prof felt as the fasting glucose was within range, my sugar levels were just fluctuating due to steroids and I just needed to be careful about diet. Headache seems cured, but raging cramp in hands and feet today. Bloods were taken before discharge, and I'm for further bloods tomorrow, then see Prof on Weds for all results.