Had appointment with occ health this morning. Woke up feeling dreadful and very tired......not a good start ! He is happy for me to try a phased return starting next week. Will have to keep a "stamina diary" and then negotiate with my manager how many hours a week I'm up to. Saw the hepatology consultant this afternoon. Bloods still in range, but they have decided to change me from azathioprine to mycophenolate mofitil due to the side effects from the aza. The list of side effects from mycophenolate looks just as worrying, but hopefully it will suit me better. The good news is, I don't have to increase the steroids to effect the change, just literally swap drugs from tomorrow. Will have to have bloods done again on Friday and return to clinic next Monday to make sure all is well. (it better be as I will be working on Tuesday!!). Now just have to see gp tomorrow to get officially signed back to work, then my manager on Thursday to work out hours.........simples!!

So.......Christmas is over and I'm still knackered. Managed to have a lovely time with friends and family and even had a glass of bubbly. Healthy diet and weight gone to pot though.Bloods were done Friday, and will get results tomorrow at hospital appointment. I can't say I feel much better on the reduced azathioprine, but am trying to convince myself that I do. This week I see the occupational Health Doc at work to discuss phased return, the hepatologist, my gp, and my manager......hopefully by Friday I will know what the plan for next week is. Have decided to just go for it and hope for the best (if they will let me) and try to appear well and able to return to work, if I don't try I won't know. Am rather anxious about it as I think I still look awful, and often feel exhausted (no chance of a siesta in a citroen c1)!

Have been on the lower dose for 4 days now.Already feeling less nauseous, but have to say I feel just as knackered. I guess as it took weeks to get in my system it will take some time for things to improve? Had my hair cut/coloured today and hairdresser reports theres not so much falling out!! Still feeling optimistic about a return to work in January.......but have only just realised that it is only a few weeks away now. Time for positive thinking and determination!

Ha Ha Ha!!! Clinic went well. Consultant OFFERED to reduce azathioprine to 50mg due to all the side effects I'm having. He said they were classic and as my bloods are now normal, what I am experiencing has to be either side effects or something else is going on. When I said the last time I asked for it to be reduced I had been told what I was experiencing was NOT side effects,but due to the condition,  he said that my bloods were not in normal range at that time.As I weigh 60 kgs and the dose is calculated by 1-2 mg per kg of weight, and only comes  in 25mgs tablets, he felt it was worth trying just 50mg! So.........I'm to have 50mg aza and continue on 5mg prednisolone, and this will be my maintenance dose for at least a year. Bloods again in 2weeks, and if there is any sign of a flare, then pred to be increased, then either aza increase or change to another immunosuppressant. Can't tell you how pleased I am with the decision. Hopefully all will go well, but at least if it doesn't, then we have tried the reduction before going through the whole rigmarole of changing drugs. Here's hoping for a happy and feeling well Christmas!

Amazing! Yesterday I received a letter from the hospital asking me to attend the "Healthy liver clinic" on Wednesday next week.....this was to discuss my progress POST TRANSPLANT!! Perhaps I'm having a transplant Monday afternoon and they will review the progress Wednesday?! I have left a suitably stroppy message on the secretary's phone. You just don't need this sort of admin mistake when you're trying to deal with this. On the advice of a fellow sufferer, I am going armed with various research papers tomorrow in a final bid to persuade them to reduce the azathioprine back to 50mg before we go down the drug change route. Just can't get my head around going back to square one (even if it means continuing side effects by staying on the aza)......am very nervous about risking worse effects and becoming (more) unwell again. Stopped the omeprazole today as it hadn't made any difference.

Having a rather up and down period over the last few weeks. still getting nauseous and hair still dropping out. Bloods were done today and I'm in clinic again Monday. I think I have decided to do the drug swap as there is never going to be a convenient time for this, I might as well just get on with it. I am still aiming to go back to work on a phased return from January 7th ish. I have asked for a part time contract from April, and will use up leave between Jan and then to ensure I never work a full week!! Saw the team I work with yesterday and it felt good to be back among them. Am looking forward to getting back to earning some money again. Had a lovely day today. M took me to the annual candle lit carol service at the donkey sanctuary! For anyone who doesn't know me....I'm donkey mad and we have 2 of our own. It was just magical singing carols in the barn with them all munching their straw and letting out occasional brays....very good therapy.

Can't believe that dropping 2.5mg pred can make much difference to how I feel, but am more tired than ever. Still very nauseous and retching mid morning despite the omeprazole.....guess that means its the azathioprine! Am still trying to get my head around changing it to another immunosupressant, can't say I'm keen, but guess it will have to be done. The question is, when? Before Christmas and risk being unwell during Christmas? Or in January and risk the planned return to work? Bollocks.......could really have done without this. Answers on a postcard/email/comment please!!

Saw the hepatologist this evening. Bloods in normal range now.......hooray! Can stop phosphate, clotting now normal, and can reduce prednisolone to 5 mg from tomorrow. However, when I said about the nausea and retching, she felt I may be experiencing stomach problems from being on steroids. So now I'm on omeprazole to see if that settles it. If it doesn't, then the cause may be the azathioprine. I also mentioned the hair loss. This, she felt was definitely the azathioprine, and where I had been thinking it was a small price to pay,(I have a lot of hair!) she felt strongly, that as I was going to be on an immunosuppresant for life, then we should try a different one. M and I were quite shocked as we had not expected that response. She offered to change it today, but I couldn't take it in.Changing it will mean increasing the steroids again whilst the change over happens (in effect, going through the last 2 months again but with another drug). I feel like I have spent 2 months getting used to this drug and was prepared to put up with any side effects, but now I don't know what to do. She agreed to let us think about it over the next two weeks. The never ending tiredness is "the main symptom of liver disease" but should improve in time. Now off to research MMP and 6MP to see what wonderful side effects they might give me. Think I will just have to bite the bullet where work is concerned and give it a go in January........however I'm feeling and whatever drug changes are going on. Sick pay barely covers utility bills, and gets stopped in February anyway, and I am not going on disability benefits.

For anyone who hasn't lost the will to live yet and who is still interested............feel like s...! Prednisolone was reduced to 7.5mg following last hepatology appt nearly 2wks ago. I was already tired and not making much progress on the stamina front.......now its worse. Needing a rest every day, nauseous mid morning for about 1-2 hrs, and appetite reduced. Aches in joints, hair falling out (from head but growing on face..lovely) bruises and capillary breaks all over my body, discomfort in liver (still swollen) and intermittent cramp in feet. Guess this is how its going to be so had better get used to it. Trying to rest as instructed at clinic, but am behind with lots of things and finding this stressful.Getting harder to stay positive. Am beginning to doubt return to work in January. Bloods were done Friday , clinic on Monday.

Just back from hepatology clinic. Mixed news. Bloods still doing OK, and phosphate has improved the cramps, so am to continue with that for a few weeks. However, they flatly refused to reduce azathioprine due to risk of causing a severe flare up. Am only on a lowish dose for my weight anyway, and got the impression that they would rather increase it............so I shut up fast. Had more bloods taken whilst there and if still in range I'm to reduce the steroids to 7.5mg from tomorrow.The feedback regarding feeling less well over the past 3wks, is that it's as a result of the reduction in prednisolone. More specifically, I had been functioning so well due to the high dose of steroids, (ie it was the drugs making me feel well) but actually it will take several more months for my body to recover, so I wasn't really "better" it was just the steroids making me believe that I was. The azathioprine can take several months to "take over" from the steroids. I have been reminded how severely ill I was "just 6wks ago" and advised to rest and give my body a chance to recover. I should apparently only be doing what I "have to do" otherwise resting! I did point out I have 5 dogs, 2 donkeys a pony and a pet care business.............it didn't wash. So from Wednesday (too busy tomorrow) I will take heed.
The right upper quadrant discomfort is due to continued swelling of the liver which (due to how severely ill I was) will take months to settle and is quite normal..........that's OK then.

Still whinging, but trying to motor on through. Bloods were done Friday, Hepatology clinic tomorrow. Plan to ask if they will reduce the azathioprine and see if my bloods can stay in range on the lower dose as I think  the higher dose isn't suiting me. I can only ask. Also want some answers about the liver discomfort/swelling, and the cause of it. Have asked M to come tomorrow for moral support!
Made 9 pots of jam last night and was feeling very pleased with myself............until I got up this morning to find they hadn't set!!!!!

Haven't written for a bit. Partly as I couldn't be bothered, and also as have been feeling rather negative. I've been on the increased dose of azathioprine for several weeks, and since then I feel more tired and not as good as I did when I was only on 50mg. I don't know if this is the cause, or if (probably more likely) it's that the steroids are now at a much lower dose. Whilst steroids have lots of horrid side effects, they do make you feel more energetic. In the last few weeks, I have stalled with progress. I am needing an afternoon nap, and struggling to get out of bed when the alarm goes off in the morning. I'm aware of every ache and pain, and running out of steam by lunchtime. My hair is falling out and I'm finding looking in the mirror difficult. I have had constant discomfort where my ribs dig into my (presumably still enlarged) liver, so cannot sit/lie comfortably. I'm beginning to wonder if I will be able to cope with  return to work if I don't get moving forward again soon; and that is not what I wanted to face.
On the plus side,
1) cramps in hands/feet are reduced since starting phosphate 10days ago
2)Am using my new juicer (not so keen on veg juice though)
3)weight about the same as before I was taken ill
4)Am driving/dog walking/managing most of donkey care
5)M loves me despite my appearance and constant whinging

Busy day.....but lovely and sunny. Saw my hepatologist this afternoon. Liver bloods are just about normal now! However, as I've not been as good over the last 2wks (cramp/headache etc) no reduction in steroids today. He wants to slow it right down. I'm to stay on 10mg pred for the next two weeks, then any reductions from now will only be 2.5mg at a time. The azathioprine is doing it's stuff so that dose stays the same. He's added in phosphate twice a day to try to deal with the cramp. The cramp is likely caused by scarring (cirrhosis) of the liver. On biopsy it showed I had bridging fibrosis.This occurred when I was severely ill and jaundiced, but may have been happening prior to me becoming unwell. The general medical view is that this is not reversible, but he thinks otherwise........hope he's right.People with a diagnosed auto immune condition are more likely to develop other auto immune conditions at the same time, and this is why the blood monitoring is done so closely. He had no idea why I should be testing positive (leukocytes/protein/blood) intermittently for UTI, but suggests I get the surgery to send the next pos sample to test for white blood cells. Maybe to do with the drugs he thinks, (like every other wacky thing going on with my body at the moment). NO BLOOD TEST THIS WEEK HOORAY! Bloods and review in two weeks time............progress. Feeling very tired tonight.

Busy day, but got through without a rest again. Did another big dog walk this morning, then just housey stuff all day. Had a go at the ginger zinger..........nearly blew my head off.......less fresh ginger next time I think. M keeps telling me to remember it's doing me good. Enjoyed a massive roast tonight (with loads of veg!), appetite is really good despite meds. weight creeping up, but not yet back to pre illness weight. Cramps on and off and still testing positive for UTI, but asymptomatic?! Due to see hepatologists tomorrow so will add to list of questions. Lovely to get comments on blog..reminds me I'm not alone in this.

Have tried experimenting with my new healthy juicer which was a birthday present from M !!! Tonight's speciality "hard as nails".....containing, 1 raw parsnip, 1 bag of watercress and 3/4 cucumber....mmmmm (ish). Apparently full of potassium and good for me. Came out bright green, but was palatable over ice. Tomorrow am planning to try a ginger zinger! Have bought half of tescos fruit and veg aisle in preparation. Have been getting increased cramps in feet and lower legs and a lot of discomfort in RUQ again. Hair not in good condition, bruising easily, and now have downy facial hair.......oh the joys of steroids. Bloods were done Friday and am due in clinic again Monday so will see how the swap to azathioprine is going. Managed a big dog walk today so am feeling pleased with myself. If I'm honest, I'm really pissed off and fed up with this whole malarky.
 I know I should be grateful and lots of others have far worse things to deal with, but I'm still finding it hard to accept this. It just feels like an endless round of blood tests and hosp appointments with no end in sight. I wish it was something that was just going to get better and I would be able to look back and say I was ill, but now it's over and I'm back to normal. Instead, I'm constantly trying to be positive and fighting the urge to be negative and to stamp my feet and say it's not fair. Feel like a child, somehow, knowing others have far worse to bear is not helping me. Am frightened of not knowing what the future may hold.

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.

Terrible night last night. Very little sleep and very uncomfortable. Woke tearful and shattered. Hospital appt this afternoon. Good news, bloods are still coming down, so steroids are doing what they are supposed to (albeit with lots of horrible side effects). However, still not below 100. They have made a tiny reduction in steroids.They think the sore area under right ribs is liver inflamation. Bloods again Friday and hosp again next Monday. If improvement maintained, then they might start the immunosuppressant azanthioprine next week, and then gradually reduce steroids as they increase azanthioprine, which it is hoped will stabilise the condition. It is not without it's own sometimes unpleasant side effects, but is preferable to high dose long term steroids. Whatever I'm on, there will be no escaping regular blood monitoring!! High hopes for sleep tonight

Best nights sleep in weeks! Could it have been watching strictly, or eating jam sandwiches at 10pm?? Either way slept from 11.30 - 8am solid. Weight still same. Ribs remain uncomfortable all the time, but not enough to stop me eating roast beef and yorkshires tonight. Managed 2 dog walks this morning then donkey care this afternoon. No tears, just anxious about tomorrows results.

Only managed 3 hours sleep last night. Stayed as busy as I could all day with just an hours rest this afternoon. Very little cramp, but skin awful and tender. Still lots of discomfort under right ribs all day. Mood brighter though and no tears at all. Lots of positive comments from British Liver Trust chat room from others in similar situation. Seems diet is the way to go, lots of veg, bit more carbs less protein sugar and fat. Also suggestions of getting tested for vit/min deficiencies and taking various supplements to boost immune system. Will discuss at clinic Monday. Hunger has returned (am stuffing a jam sandwich as I type) despite all fruit efforts today. Weight same at 9 stone. This thing is taking over my life. I cannot switch off from reading/chatting about it and am sure I'm driving everyone insane with tediousness of it all, but can't seem to stop. Just feel like I have to learn as much as possible to maximise my chances and try to gain some control over the situation. Don't know if this is the right way to go, but the alternative would be to just let the medics do their thing and remain passive........surely that wouldn't be right?

Uncomfortable night due to right ribs/?liver. Skin looking terrible, I guess due to steroids, and still a bit yellow. Up at 7am and quite a steady morning. Not feeling so unwell and managed 2x dog walks, coffee with M's mum then off to the surgery for bloods again. Sticking with healthy fresh fruit salad as much as possible to avoid eating so much rubbish, and at least 1 banana to reduce cramps! Weight remains at 9stone whatever I eat. Have stayed positive with no tears today (after wailing to a friend on the phone last night). Bed for a couple of hours this afternoon, then a lovely hour with the donks in the sunshine. 3 dogs boarding so busy weekend ahead. I know I have to take each day/week at a time, but finding it really hard to not think about the future.............absolute crap not being able to plan anything, and so confusing when one minute you are buzzing and the next you keel over with exhaustion.

Not a good day. Started getting discomfort below right ribs last night (just like when all this started weeks ago). Still there all day, feel bloated again and having to wear loose clothes. Nauseous this morning and cramps to hands/feet still there. I even think eyes are tinged a bit yellow again. Due for bloods tomorrow, fingers crossed the levels aren't on the up again. Feel very tired. So much for all the extra fruit and veg.....................may have to buy bannoffee pie again

Have found the British Liver Trust's website and chat room! Lovely to discover others in similar situations and to be able to get advice/support. Discovered that the cramps are probably to do with the steroids and that others have found relief from eating at least 1 banana a day. Went supermarket shopping this morning to stock up on healthy stuff..........aghhhh...........but three puddings at one sitting has to stop! Now on extra fruit/veg, and trying to make it interesting. Felt a bit unwell whilst shopping, then found M in the fruit and veg ailse......she knew I was too tired to manage very well on my own so came to help me ............what would I do without her?Healthy lunch then sleep for a few hours this afternoon. This routine seems to be helping big time, just have to pace myself and stick to only the jobs I plan each day. Managed the donkey care ok again this afernoon. Beginning to wonder if I might be able to return to work in the future, if only part time.

Slept well from midnight last night and felt ok this morning. Managed to do quite a bit (cat feeding, one 1hr dog walk) Back to bed this afternoon for a few hours, and then active from 3-bedtime. Did all donkey care this afternoon and played with our dogs in the garden. Still eating too much.............plan to start eating a more balanced diet (well at least not eating 3 puddings at a time!) Mood brighter, some cramp/discomfort/tiredness but generally a really positive day. Am finally able to get in touch with friends and thank them for support, managing email and phone calls without falling asleep half way through.

AIH0308.PDF

AIH0308.PDF

Whoohoo.......bloods are still coming down! At their worst the ALT was 1,800 (normal below 100) last week had dropped to just under 700, this week just under 300. This means am in remission. They wouldn't drop the steroid dose this week though just in case. So..........same dose, bloods again on Friday, clinic again next Monday. Ultimate aim is to get me on lowest possible steroid dose and to introduce azanthioprine (imminosuppressant) to stabilise condition. Bad news.......this could take weeks/months depending on each result. can't see me being back at work anytime soon. Felt well today and managed without having to go back to bed. Walked one of our dogs this morning and enjoyed a walk with M on the Hoe before hospital this afternoon, and I drove to Plymouth, the furthest I've managed in weeks!Lovely to get to the sea again. Still eating bizarre amounts of food and not gaining any weight!

Best night in weeks. Slept from midnight to 7.30 am. However, once up, terrible day. bad tempered, weepy and tired. Think I did too much yesterday, or it's just all catching up with me. Had hoped for a nice relaxing Sunday, but found myself cross with the donkeys (who wouldn't do as I asked) I have never lost it with them, but ended up in a stressful stand off, me with anti itch cream that I needed to apply, them running away. Me begging them to behave and crying, knowing this would not work but somehow unable to change tack. Me in melt down, them looking totally confused as to what was wrong. Eventually all calmed down, cream was applied to insect bites and hoofs cleaned. Remained weepy all day and don't know why. Went to bed at lunchtime, but didn't wake up feeling much better. Off to the hospital for results tomorrow. Plan to have a walk on the Hoe beforehand.
Still eating mountains, weight 9st 1lb

meant to say........have found a support website autoimmunehepatitis.co.uk ...support info for those with AIH

Well I finished off the bannoffee pie late last night! Didn't help me sleep, awake much of the night with thoughts racing and feelings of cramp again. Fast asleep of course when the alarm went off. Up and busy from 8am, 3 dogs and 2 rabbits boarding with us, and cats to visit/feed. Took one of our dogs walking (blackberrying) on my own this morning and enjoyed it, although at a slower pace than usual. M and I then took my parent's dog home who had been spayed yesterday, so had stayed the night with us. It was lovely as it was the first time I've seen my dad for about 6weeks as I have been too ill to drive/travel. Home by 4pm (no nap today and coped well). Donkeys seen to with M, rabbits collected boarding dogs dropped home, then supper delivered by friends/customers again, so thoroughly spoilt. little sign of jaundice now, so something is working well. Appetite still huge:

7.30  4 biscuits and tea/tablets
9.00  2x toast and coffee
11.00  mars bar and coffee
12.30 Cheese and marmite sandwich and pringles/juice
2.30 2x cornish fairings/kitkat and tea
4.00 juice x2
6.00 pringles
7pm garlic bread, lasagna, salad, lime/raspberry mousse (x2!) coffee and Polish chocolates (had to as the rabbit customers gave them to us today, would have been rude not to!)

weight 9st 3lb!

Feeling much happier although wrecked

Unable to sleep last night for cramp in toes, lower legs hips and hands. Mind racing and unable to switch off. Found myself looking for books on auto immune hepatitis. Most of them are for medics and cost between £110-£600 . Guess they don't want us to understand the condition, seems you have to buy entire text books on hepatology to get a section on the specifics of auto immune hepatitis, or a whole book on other auto immune conditions to get a chapter on the condition.Up at 7am. Weight down to 8st 13lbs, metabolism must be crazy as I have never eaten so much in my life. In fact today I ate the following:

7am 4x biscuits and lemon/ginger tea with tablets

9am 2x toast and coffee

11am 2x LARGE choc covered marshmallows and coffee

12.30 LARGE bowl carrot and coriander soup 2x crusty rolls and an apple turnover

3pm 1x bag hula hoops and squash

6pm 2x LARGE sausages 3x bacon mushrooms tomatoes and fried potatoes squash and bannoffee pie

And as its 7.45 pm........there will be more before bed (in fact, I am defrosting more bannoffee pie in case!)

I have been much more active, but still have repeated cramps in hands, legs and feet.....will have to try a magnet in the bed tonight as my Nan used to recommend.

Better nights sleep. Feeling more positive and a bit less tired. managed to do quite a few bits this morning, though had to give in and go back to bed at lunchtime. Lots of strange physical things, toes, hips and fingers getting cramp on and off. Mouth ulcers, flushing, sensitive skin and joint pain/headaches. Appetite still massive but no weight gain at all........!Trying not to think too far ahead and to take it week by week. Bloods re test tomorrow, fingers crossed for more improvement. Nice being up and involved a bit at last.

Feeling better

Found I was still awake and buzzing at midnight last night..............settled after buttered crumpets and tea, and slept from 2-6am. Thought it would be a good idea to take prednisolone early at 6am , but then woke again at 7am thinking I was having a heart attack......indigestion . made myself get up and start the day pottering as usual. No headache this morning. Even managed a short walk with some of the dogs, but still not able to drive confidently. back to bed for an hour at lunchtime after supportive phone call from boss. Able to visit my donkeys and not overdo it .Less tearful today and feeling generally more positive. Cannot stop eating, but weight still same. Skin feels funny and face a bit puffy, mouth ulcers and tingly fingers. Managed more overall without feeling quite soooooo tired

Reality sets in

Woke feeling dreadful. Is this withdrawal from Duloxetine? I have tingly electric shock sensations in my fingers and my heart is racing at times. I have a headache that won't clear (dare not take paracetamol) and just want to sleep. I make myself get up and potter around seeing to visiting dogs/rabbits. Weather is awful and M will not let me go out in this, so she is still doing all donkey care. I miss them. Decide to try a little food shopping at local shops, but regret this as I feel woozy and panicky/nauseous. Come home and spend the afternoon in bed. After tea, become weepy ++ cannot see how this is going to affect our lives. Will I be able to work again? If so will it just be part time? How do you run a pet care business if you're not allowed out in the rain? Are we able to manage without my income? Am I going to be some poor pathetic poorly person forever only pottering and on and off steroids for the rest of my life? What if the drugs don't stabilise me? What about the SEVERE possible side effect that I googled last night? Not usually this negative. M tells me to stop it........if only I could. Hopefully this is duloxetine withdrawal and positivity will return tomorrow. Speak to my son, he's so lovely and makes me laugh....mother love...best drug ever!

Auto immune hepatitis

Monday 16th September 2013

He got it right. In clinic I am told that the biopsy confirms that I definitely have auto immune hepatitis. My bloods are moving in the right direction, the consultant looks like the cat that got the cream. Bizarrely, M and I are thrilled with the news. At least we now know what is causing this. We have loads of questions, but he stops us saying he will be seeing me weekly and there will be lots of time for questions in the coming weeks. He wants to reduce the Prednisolone by 10 mgs to 30 mgs daily from tomorrow. I am to have repeat bloods on Friday and then see him again next week in clinic. He plans to gradually reduce the dose over the next 3 weeks then introduce an immunosuppressant to stabilise the condition. He touches on side effects, but will not go into details today. We leave feeling very positive and begin to ring friends and family on the way home with the good news. We call in to M's mum to update her. Everyone is pleased. It's only later that I start to realise that this is not necessarily great news, but try to push this from my mind.  I expect to sleep well, we are both exhausted, but find once again, I'm awake and snacking before finally falling asleep around 2am

dulxetine withdrawal

Friday 13th September 2013

First day without duloxetine. Not bothered about mebeverine, except if IBS flares, but can manage that with diet I think. Appetite now returned and eating well. have gained 2lbs. Urine almost normal and am now able to potter around the house for a few hours at a time. Off to gp surgery for more blood tests and to collect a further 4wk sick note. My son comes with me as I haven't driven for some weeks and he is worried about me. We had a lovely evening last night, enjoyed a meal and a snuggle with tea and cookies whist watching TV. He was so caring and concerned about me. I miss him so much but am so proud of the man he has become.We pop to see M's mum who he hasn't seen for some time, then back for lunch with M, who agrees to give him a head shave with her dog clippers! Feeling weak and tired again, so M takes him to the station whilst I return to bed.

Saturday 14th September 2013

AGHHH.............urine very dark again and eyes still looking yellow. Am beginning to get very anxious about results on Monday.............what if he's wrong and we still don't know the cause? What if the steroids are just calming the inflammation and not the cause? In the evening, a customer brings round a huge meal for us, complete with side dishes, wine and non alcohol wine for my poor liver. Home made banoffee pie for afters, delicious. It was so thoughtful and kind of them. We are usually so independent and find it hard to accept others help, but were truly grateful for this.

Sunday 15th September 2013

Hooray.............urine normal again (my life has become a study in bodily functions, not good for general conversation). The same customer calls to take one of our dogs out for us in the morning. This seems like a huge imposition on her but she is adamant. Unfortunately the said dog decides to roll repeatedly in fox poo whist on the walk requiring a full shampoo and hose down on return...............I'm sure this was not what they had planned for their relaxing Sunday!
Still not sleeping but have a little more energy.

Steroids

Tuesday 10th September 2013

I'm given my first dose of prednisolone 40mg (I've only ever known anyone be on 30mgs before) I'm also prescribed calcium d3 to combat the risk of osteoporosis that comes with taking steroids. I'm told to have bloods retaken at my surgery on 13th then to attend hepatology clinic next Monday 16th for biopsy results. My sister comes to collect me (M is working) and we go for coffee whilst waiting for the script to be done. I hope the consultant's gamble is right and his suspicion of auto immune hepatitis is correct, but will have to wait till next week to find out. Home soon after lunch, back where I belong. Still obviously very yellow and lethargic ++. Strict instructions to rest when I get home, and already have a slight appetite. Weight now down to 9stone.Spend the evening hearing all about the graduation I missed and looking at photos taken by Mum, M and my sister. Wish I had been there. Unable to sleep, keep singing songs in my head but my body is knackered.

Wednesday 11th September

My sister has to leave this morning. It has been great knowing she was here to support everyone, run errands, cook tea and just love me. Will miss her. Phone and texts from everyone do not stop, I'm genuinely surprised how much everyone cares. Even my bosses have been on the phone to M to tell me not to worry about my job and to just concentrate on getting well................if only concentration was all that were needed. Bed again after lunch, feel so bloody useless. Not able to settle at night, mind racing though body wrecked.

Thursday 12th September

Small but noticeable reduction in level of jaundice. Steroids are definitely calming things down (except my brain!) Urine less dark (has been like ale for weeks) eyes slightly less yellow and skin a little improved. At teatime I receive a call from my lovely gp. She tells me to stop my duloxetine immediately and also my Mebeverine. I have been on these drugs for at least 6 years to manage anxiety and depression. She says there are clear contradictions with liver problems and I should stop them. I had already asked the consultant about the duloxetine before leaving hospital and he had reassured me it was ok. However, I know and trust my gp, I'm off sick anyway, how bad can sudden withdrawal be??

Liver Biopsy

Monday 9th September 2013

My sister takes me to hosp and stays whilst I'm admitted to the planned investigation unit. M crys. I still don't realise how unwell I am, but just feel heartbroken to be missing my son's big day. My procedure will be at 3pm, the exact time that his ceremony commences. At 2.45, he texts me to say he's thinking of me and he loves me. The biopsy is painful but over quite quickly, and the staff are just brilliant with their reassurance. I have local anaesthetic but no sedation. I'm hungry from being starved again. I text my son to say I'm sure his gown is better than the one I'm wearing with my bum hanging out. The bloods that they took in the morning are worse again (how much worse can they get?). The consultant tells me he is 80-90% sure that I have auto immune hepatitis and wants to start me on steroids straight after the biopsy. I admire his confidence, but am beginning to feel that we will never know whats causing this. I ask if he is right, what the prognosis is. "It will be a life long condition that will have to be managed". I eat a sandwich whilst on 6 hours bed rest following the procedure. I'm not even allowed to go to the bathroom. I sleep fitfully and look forward to awaiting more results.

Viral Hepatitis?

Saturday 31st August 2013

I am unable to get out of bed other than to the bathroom. I am YELLOW in a big way. I am exhausted and barely eating. I spend the weekend in a daze wondering what will happen next. We run a pet care business from home and lots of customers are genuinly worried/concerned. Phones and text come often, but my partner has to deal with all this. All I can do is lay in bed listening to her doing everything. She has doubled her workload with me out the picture. She is having to do all donkey care on top of everything else. I miss my donkeys, and she agrees to drive me down the field to visit them on strict instuctions to stay in the car. I sneak a few kissess and cuddles with them for comfort. Will I have to give them up?? I can't bear the thought, but we won't be able to sustain this for long.

Monday 2nd September 2013

I am driven to the outpatients dept at derriford and dropped at the door as I cannot walk more than a few paces. I am not in pain, but constantly uncomfotable, and needing to wear loose clothing etc. I check myself in and wait for M. We are seen quite promptly. The news is not what we want to hear. We want more than anything to know WHAT is causing this. It's not viral hepatitis. So what is it. A liver biopsy is now booked for the following Monday . This will mean I miss my son's graduation, but they will not budge. I am now so unwell and the jaundice is causing potentially irreverible damage/scarring to my liver. More bloods show further deterioration. I am like a pin cushion and have had enough. I can't think/speak properly, M has to do most of the talking and keep clarifying things to me during the consultation. I know how worried my son is but I have nothing to tell him and no way of reassuring him as I just don't know myself.

3rd-8th Septmber

My sister arrives on a planned holiday. She usually looks after the animals whist we have a break, this time she has to look after us. I spend the week much as before, sleeping and trying to eat. On Sunday 8th I vomit for the first time. I'm the only one who does not recognise the significace of this (i.e further deterioration) and I continue to insist that my partner, sister and mother attend the graduation, whilst I go in to hosp for the liver biopsy tomorrow. A near argument ensues, but everyone does as I ask. I can see M's heart breaking but she loves me enough to do what I want and be there in my absence. My son seems to understand and just wants me to be well.

Not gallstones afterall

27th August 2013 cont

Having waited for 2 days for the ellusive scan, I had needed to be nil by mouth. In bed on the assessment unit, they were monitoring me and realised that my blood glucose had dropped (what a surprise) so I now had to have another drip of 1000ml glucose following all the saline! Very little sleep, very busy area of the hospital, a kind of chaotic all night sorting ground. Nil by mouth again from midnight in preparation for the scan tomorrow,

Weds 28th August 2013

Finally scanned and no gallstones found. Visited by different consultant and moved to stonehouse ward, cholorectal speciality.

Thursday 29th August 2013

More bloods, they now think I have viral hepatitis, but I am not in a high risk group, have not been abroad, don't do drugs/drink/tattoos, haven't done anything exciting or dangerous! Very jaundice, blood levels getting worse, so presumably liver getting more damaged (will this be reversible?). Am now tearful, as we are no nearer forward in knowing what is causing this. Started one of the best jobs in my life only 6 months ago, have never had a sickness problem, generally I'm like the "Eveready bunny" that just keeps going. I fear this is very serious, and am beginning to pick up the anxiety of those friends and family around me as I just get weaker and more pathetic by the day. My only son graduates from University on the 9th September and I can't see I will be able to go. Tears envelope me.

Friday 30th August 2013

Consultant says I can go home for the weekend and be seen in clinic on Monday. Signed off a further 2 weeks. I'm afraid I will lose my job. I am younger than my partner, and had envisaged being the breadwinner so she could wind down to retirement next year. We have plans. It's all going wrong. I am collected by her and taken home to be nursed as only she can nurse. I know everyone is very worried. I am prepared for the worst and expect bad news.

gallstones?

9th August 2013

I came home from work as usual and didn't want my tea!! Very unusual. Went down the fields to see my donkeys and found I couldn't push a wheelbarrow without pain in my stomach area. Felt like I had pulled every muscle in my middle but couldn't work out how. my day job involves driving/computing, visiting people..........just didn't make any sense.

10th-11th August 2013

Spent the whole weekend moaning and whining that I felt unwell. Off my food, full after just a few bites. Found I could only manage soft food, so pigged out on Berrie pavlova x 2 for Sunday lunch

12th August 2013

Really important meeting to attend at work that I had spent almost 6 months securing with a practise manager. Felt dreadful, weak, and very uncomfortable but was determined to go to work. Took stomach settlers, went down the field to donks then showered and planned to go in. However, realised that I could hardly put one foot in front of the other. Overwhelming exhaustion, just could not go. Called the gp and arranged a call back from her to discuss. Duty gp rang and said she thought she ought to see me. Seen in the afternoon and provisional diagnosis of gallstones given! Signed off for a week, given metranidazole and amoxycillin, blood tests booked and referred for scan within 3 weeks..........result, how bad could this be??

15th August 2013

Ok it's a nightmare. Can't eat or be around food, nauseous, retching, exausted and losing weight. Called duty gp given prochlorperazine for nausea caused by anti bio tics.

19th August 2013

Still utterly exhausted and losing weight fast. Called duty gp. Signed off for 2 weeks rest, drink plenty of fluids, "if I had blood results like your I'd feel exhausted too"

Monday 26th August

Now showing signs of jaundice. Eyes and skin yellow. have lost 8lbs and cannot eat properly

Tuesday 27th August

Hooray.............my own gp back from leave. Arranged to see her. Took one look at me and said I needed admitting and we needed the ultrasound scan now. Sent into Derriford Hosp surgical assessment unit. Naively thought this meant a bed was waiting............oh no...........waited in day room from 3pm until finally getting a bed at 10.20pm. Was seen and bloods taken again, ran out of time for the "urgent" scan so was put to bed on a 1000ml drip x 2 of saline. Night nurse thoughtfully gave me anti clotting injection.............only to discover at midnight when the doctor tried to put a line in my hand the vein exploded causing huge bruising...........guess the heparin wasn't necessary.