Ohh dear........seem to have missed several days! Pred now down to 10mg and aza at 75mg. Have felt generally more tired and head achy over the past week. Cramp continues, and is a real pain in the arse, waking me up in the night and generally striking at the most inconvenient times.Urine still testing positive to leukocytes and blood. Have not been as active over the past week either. On a positive note, my sister and her partner came to stay and it was lovely to see them both. I probably stayed up too late and talked too much, but I don't see her often........couldn't miss out. I also managed a meet up with another friend on Monday afternoon, her gift to me......a book on positive thinking..am working on it. Received a very positive letter from occ health too so am feeling good about a phased return to work in the New Year. Bloods tomorrow and hospital Monday......and on it goes

Lovely weekend! Still positive to leukocytes but don't feel too unwell. Still getting cramps, and skin /hair a mess, feeling a bit weary, but have managed near normal activity yesterday and today. Mum and Dad came for lunch, and I cooked it all and didn't mention AIH once (at least I don't think I did).We have had boarding dogs all weekend so have been busy. Also trying to prepare for the predicted storm tonight as we have lots of animals and out buildings to think about. Gates all shut, donkeys and pony in safe, sister in law's birds all secure in case aviary roofs come off, and dogs all hunkered down for the night. Rain now lashing down, but little in the way of wind yet. 4x4 won't start and hall ceiling has sprung a leak.............hey ho.......

Think I have a UTI. Have been feeling below par for a few days. Tested positive for leukocytes/protein/blood (handy being a nurse and having your own test strips)last night and again this morning. Saw duty GP, (with sample in handbag ready for him to send)........he tested it and it was clear. No temp, or obvious symptoms (other than frequency) but am concerned that the steroids might be masking this. Advised to drink and wait. Positive to leukocytes again tonight though. When I suggested he speak to hepatologist, his response was "why?" he also asked me how I got AIH!!!.........not very reassuring when a medic doesn't know you don't "get" AIH........will have to monitor over weekend and speak to clinic Monday for advice.Heps have already stressed that if any problems occur they should be discussed with them. Bloods done today again as planned. Head achy/tired, but have done a dog walk today and various other bits and pieces. Good news, my sister is coming for a few days next week.....hooray!

Appetite huge again and weight up to 9st 4-5lb. Cramp in toes/legs driving me insane, everything tastes of soap/metal. Hair lank and falling out, feel exhausted again. Positive note, occupational health rang today and were supportive of my goal to return to work in the New Year. Don't feel like blogging or anything much today

Have been on the increased dose of azathioprine for 2 days. Feel very tired again and appetite seems to have increased also. No horrid side effects though. Feeling more positive and trying hard to stop obssessing about this condition. It's hard, but apparently every time I open my mouth it's to say something about it. I just haven't been able to switch off from it, think its about trying to come to terms/ajust to the diagnosis and its implications.. However, from now on I'm going to try to think of other things, and realise that other people also have lifelong conditions and they just get on with it. I'm nothing special, and I need to focus on moving on from this. Will unsubscribe from support forums and stop searching for info, and just accept that the hepatologists have it all in hand and will tell me when to be concerned.

Very tired after a late night, so my own fault. Terrible Cornish weather.....very wet and windy, just what you want with dogs/donkeys etc. Everything seems sooooo much harder in the rain! Still unable to walk in wellies so looked like a mad woman in flip flops in this weather. Saw my lovely GP today who was pleased to see how well I looked. The last time she saw me I was completely yellow from jaundice and could hardly walk..she sent me straight to hospital. She is concerned about the osteoporosis risk from the steroids and was not appeased by my saying the hosp had prescribed calcium d3 to address this. She feels I should be on alendronic acid..........hepatologist doesn't feel this to be necessary........who to believe?? Apparently , the hep clinic will do a bone scan in 12months to check for damage! Will have to research myself and see what the difference is.Anyway, as I'm tolerating the azathioprine, they have increased it to 75mg from tomorrow. The Prednisilone is to stay at 15mg for another week. Bloods again Friday and clinic again in two weeks. I am still advised not to have the flu jab yet while they are fiddling with the meds, however I'm also told I'm in the high risk group and now is the time to have it!?! All in all a positive day, but am seriously wrecked tonight and soon off to bed.

Feeling very positive! Have had a good day and been active all day. Best bit........my son and his lovely girlfriend came to dinner and are staying tonight!! Lovely to see them and very enjoyable evening. Very tired now, but don't want it to end. They go again in the morning. Eating healthily (except chocolate trifle for pudding!) weight stable, skin improving, but hair dropping out (side effect of azathioprine I think). No upper right quadrant pain for 2 days, and little cramp. GP and hep clinic tomorrow, hoping for reduction in steroids.

Well I haven't written since Tuesday........so here's the latest. Weds 16th was a good day. Had it as a gentle rest day, made homemade healthy soup, flapjack and generally pottered. Mum visited in the afternoon and we just chilled. Apart from soreness in the liver area (or upper right quadrant as other AIH sufferers call it), generally felt ok. Thursday was my Birthday! Was woken by a text from a friend at 6.30am to wish me a happy birthday. However, this meant a quick nip to the bathroom, and on the way back I managed to stub my little toe on my laptop which I had left on the floor the night before. Lesson learnt .......... If you don't want to break your toe at 6.30 am .......don't leave things on the floor!! Yes, the pain was so bad I was clutching my toe on the bed waiting for it to abate, when I promptly then got cramp (thank you steroids) in my hip.....causing much hilarity and tears VERY early in the morning. Not the birthday start I was hoping for. The toe remains black and I can only walk in flip flops (not good in Cornwall in the rain when you have 5 dogs 2 donkeys a pony and 3 customer dogs to care for boarding at the house). Poor M has had to do everything for the last 2 days. It has however, taken the focus off the AIH a bit, so I guess that's good. Diet is alternating between healthy fruit/veg/nuts and unhealthy chocolate/cake puddings (well it was my birthday). I have had to take paracetamol for the toe/foot which is not great but it's been so sore. Steroids are now down to 15mg since Tuesday. Bloods were done yesterday and I am to attend clinic on Monday for review. No obvious side effects still from azanthioprine and I'm 12 days in so hopeful, fingers crossed the bloods don't tell a different story. Have been reading a good book by Dr Melissa Palmer on hepatitis and liver disease. Had to get this from America, and although a little dated is really "user friendly".It has a complete chapter on AIH and lots of guidance on diet and managing the condition. Next book waiting to be read is on the "Auto immune epidemic".....looks a bit scary and seems to basically say that unless you live in a complete bubble you are at risk of developing an auto immune disease due to environmental factors etc..can't wait. Mood good, less labile (? due to steroid reduction) Have stopped fretting about going back to work, what will be will be .weight stable (although if I'm honest, I had a feast of fruit loaf and peppermint tea at midnight last night so I guess that won't help).

Rang the hep clinic for advice re recent pains and various other questions. No one rang back, so by 5pm thought bugger it and took paracetamol anyway. Headache cleared but liver pain not much better, so at bedtime thought bugger it and took piriton to help me sleep..........hooray, spaced out for 7 hours. Not sure what effect if any this may have had on my liver but don't care. Felt a bit muzzy this morning, but managed the planned meeting at work. Found it quite exhausting but have now handed over "my patch", laptop and phone to a new member of staff . Have also given her an idiots guide to the area and all my contacts that I worked so hard for. Raised the possibility of changing to part time when I am able to return to work, and this was received positively,  my boss will give it thought. Just can't bear the thought of not working at all, and really want to continue with the service I had established, but I know it will be part time or not at all. Have reduced prednisolone to 15mg today. Bloods Friday and clinic again next Monday. Healthy diet gone to pot over the last few days and has included chocolate orange segments (bought for my son!) rice pudding, biscuits and generally far too much rubbish......was nice though. Healthy diet will resume tomorrow. Weight stable at 9st 3lb. Feeling exhausted but pleased tonight

Well so much for feeling so positive and upbeat in my last post! Last Friday night was dreadful. I had severe pain in liver/shoulder and did not sleep well. I woke early and could not stop crying. My head hurt and it even hurt to open my eyes. I had done rather too much on Friday, but I didn't expect it to affect me that badly. Or maybe it was to do with the Azanthioprine.....or my LFT's..........or the auti immune hep..........or the steroids.............or God knows what. I just felt dreadful. I could not get up, and had to go back to sleep, buggering up the morning entirely. Eventually dragged myself out, but remained weak and headachy all day. Back to bed again in the afternoon, and felt a bit clearer by early evening. Slept 12-6.30 and felt better this morning. Have managed a fairly normal day today and got more done. eating well, no sign of the expected nausea. Pain in upper R chest /shoulder and still a bit headachy. Cramps/ mouth ulcers etc continue. Am seeing my boss on Tuesday, and had hoped to discuss phased return in a month or so.  Blood results tomorrow, and further reduction in steroids if all well.

Still positive. No obvious side effects from azathioprine, but someone else with this says I may still get side effects in a few weeks, so will have to remain patient. Asked some others with the condition about returning to work part time. Mixed response, advised to go slowly, make sure boss understands condition/effects of condition etc. Some went back part time after 3 months ish, others were unable. I really want to TRY part time (if work agree) by end Nov/beginning Dec...........not least as am now on 1/2 pay and all pay will cease on 12th Nov (other than statutory sick which wouldn't  even pay the utility bills). Plan to discuss with boss next week and see if we can agree a phased return. I guess I will know quite quickly if I'm being too ambitious. I am doing a bit more each day though, so feel I am making some progress. Have never eaten so healthily in my life........M putting up with this valiantly although she says she feels like a stuffed pepper from all the veg she's eating. weight stable. Managing 1-2 1 hour dog walks a day and afternoon donkey care. Able to drive/shop/cook.....all stuff I couldn't have imagined a few weeks ago. Bloods tomorrow, joy!

Very positive day. Day 2 of azathioprine and very little side effects. Still getting raging cramp in toes/feet though. Did an hour dog walk this morning, and spent afternoon shopping with Mum. No sleep required! Home to see to donks and then another vegetable laden meal, followed by research into immune boosting foods. Good news is I'm eating most of them and only now need to make a few additions.  Remain upbeat and positive............hooray!

Little sleep last night so felt a bit weary today. Blinding forehead headache that won't budge, cramps on and off and discomfort in liver area. Consultant says this is normal as my liver had been severely inflamed and will take time to settle again. Started Azanthioprine with no immediate side effects. Had to have a rest this afternoon though due to tiredness. Eating well. Weight 9st 3lb (and climbing!). Have joined a forum on autoimmunehepatitis.co.uk a support website started by Matt hastings who was diagnosed in the nineties when doing his GCSEs. Loads of useful/helpful info on there posted by those living with this condition. Very supportive and positive site. Will be visiting it/chatting on it often!

clinic feedback

Very good weekend! Stayed awake all day Sat/Sun. Enjoyed some dog walks/cooking/visitors and general normality. Have susutained the positive feelings and had no tears. Sleep however remains a problem as does skin condition, liver discomfort and cramps! Seen in clinic today. Bloods down to 82........almost normal range. Therefore they have reduced steroids by 5 mg from tomorrow and will reduce by another 5mg next week. Finally get to commence azathioprine (immunosuppressant) tomorrow. I cannot be surprised if this gives some unpleasant side effect, but will just have to accept that. Bloods will be checked again on Friday (as they now have to monitor white blood cells due to risks of azathioprine) and weekly for at least 6wks. If all goes to plan this drug will stabilise the condition and I should be able to return to near normal in time. Feeling very pleased and positive /hopeful for the future now.

Awake early but had a fairly good day. Managed without a sleep this afternoon, instead, had my hair cut and coloured.......hooray!! Eating loads of fruit and veg (and bananas for reducing cramp). Weight 9st 3lb. Received photos in the post of my son's graduation which I was unable to attend last month. Promptly began to wail, but in a good/proud/I think appropriate way. he is now working at the Uni he just graduated from, how good is that. Straight into work and paying his own rent. Was hoping to see him this weekend and had been looking forward to it but he is full of a cold so quite rightly doesn't want to risk giving anything to me. Will have to wait a bit longer, sometimes really miss him though. Plan a restful/stress free weekend pottering and catching up with things. Bloods were done this morning, so hopefully new drugs Monday when seen at hospital

Excellent day! Have been really busy and coped well. Diet ok (9st 2) less cramp today and generally feeling quite well. Emailed my boss last night, and got a lovely positive reply today. There might be an opportunity to work from home for a while when I feel ready (hadn't thought of that)! Stayed awake today except for 1 1/2 hours after lunch. Picked and prepared/froze/stored apples for the winter, walked a couple of dogs, coffee with M's mum, cooked tea and saw to afternoon donkey care. Feeling very pleased with myself...........please God it lasts tomorrow. The trouble with this illness, is that one minute you feel and appear fine, the next, you have sudden exhaustion. There is no pattern. It's really hard for others to understand the effect, I'm still having difficulty grasping it. It's not logical. Usually, if you "overdo" something, you expect to feel tired, have a rest and recover. With this there is no pattern. You can sleep really well but have a dreadful following day. You can have 3 hrs sleep and be lively and bouncing off the walls/ positive. Rest is no guarantee to feeling better. Everything can be apparently going swimmingly, but then you are suddenly weeping and wailing. I've been talking online to another AIH sufferer, who has been living with this for 14 years. She is now running her own business and apparently doing well. But it never goes away. She still has episodes of exhaustion and those around her find the illness difficult to comprehend as she appears well much of the time. It is becoming apparent that this is going to be a life long condition. It will have to be managed as best I can through diet/exercise/drugs/blood monitoring/and just pacing myself. I will have to be stricter in the future as to how much I can manage, and learn to accept I will not be as fast as I like to be/have been. Things that would have taken me 1/2 hr to do are currently either not possible or at best taking twice as long as before.

Well last night I took some piriton to help me sleep, and it worked! 7 hrs solid. Had a good day yesterday and today, weight 9st 2lb (so much for eating healthily) still intermittent cramp in hands/feet, still discomfort in liver. More active, although still frequent episodes of sudden lethargy, and needing an afternoon sleep. Generally less tearful/labile, but have just emailed my boss with an update and found myself in floods of unexpected tears. I guess the fact I'm missing work, feel cut off etc is a sign I'm getting better. Don't think I had remembered how much I was loving my job. Spoke to our team secretary last week who told me she had rung all my caseload, and not one had complained about my unavailibility, they just wanted me to get well and sent good wishes...how nice is that? Please God, will get back at least partime in the future.