Bit of a mad week clinically. Had my liver ultrasound on Monday, saw my GP Tuesday, had bloods taken Thursday and went to hepatology clinic today....my new career. The good news is my ALT/AST remain in normal range and thats been since September, the longest since diagnosis, so all the signs are that I am finally in remission. However, the scan was good in that it didn't show any advanced fibrosis, but confirmed I have chronic liver disease. I guess I already knew that, but sitting opposite a consultant and hearing the words out loud somehow seemed shocking. The bad news is, I have to remain on steroids for at least another 12 months, they won't risk dropping the dose any lower in case it all goes wrong again. He said that I am finally where he had hoped I would be last December. I also will have to have a further liver biopsy in the New Year as apparently whilst the bloods are normal, it's the only way to see exactly whats happening in the liver. Am really NOT looking forward to that again!!!!!
As my bone scan was normal. I'm seriously considering stopping the alendronic acid as it is such an awful drug. Have to have bloods again in 4wks and be seen in clinic again following that.
Feeling exhausted and fed up but trying to be positive.

Seen in clinic today. Bloods still in normal range so pred reduced to 5mg from tomorrow. Finding it hard to accept that I still feel so ill despite bloods having improved. Liver ultrasound due on 1st Dec and also to be seen in clinic for blood results that day. So fed up with the lack of energy, and hepatologists lack of awareness of how the condition affects your wider life; all they seem to care about is the liver enzyme readings being in range. Feel utterly exhausted.

Well life remains a rollercoaster and rather chaotic as usual. Prednisolone now back down to 7.5mg, with no obvious effects so far. I continue to try to pace myself and not overstetch what I can do, otherwise I spend at least 2 days paying for it. It's a fine balance between trying to build stamina, and not causing all out exhaustion.
I went for the consult re: spider nevi. Have decided not to proceed...as I am a baby and was surprised how uncomfortable the treatment was!! Will just have to get used to looking like this I guess. I have, however, agreed to and been referred for counselling. I need some help getting my head around this enforced change in lifestyle. One year in, and I'm still furious about it and feel trapped and unable to move on. I know remission can take up to 3 years but I'm really not very patient, and what if I'm one of the one's who doesn't reach remission? What if this is as good as it gets for me? Staying positive is increasingly hard work. I miss my independence. I miss my stamina, and I miss being able to plan anything. I hate that I am unable to work/be relied upon for anything.
I do however, love my donkeys.....and they love me

Seen in clinic today. Bloods remain just about in normal range. They have agreed a very gradual reduction in steroids from tomorrow. Going down by only 1mg per day for one week at a time. To be seen again after more bloods in 4 weeks. Also to be referred for another scan to check all is well in the liver/pancreas area. If this shows any problems, then for an endoscopy to check for complications such as portal hypertension/varices etc. which is not uncommon with this condition. Am having a consultation at the nuffied on Weds to see if the spider nevi can be lasered.....hepatologist not keen as she thinks they will just return due to the condition being chronic...and this would be a waste of money. Have tried to expain about self esteem and how when I look in the mirror I no longer recognise myself. She felt that self esteem might be worse if the spider nevi returned after having had treatment. We agreed I would have the consult, but not proceed with treatment before feeding back to her. For her part, she will research the benefits/ success of treatment for people with  chronic liver disease.

Had my first bone scan today after 13mths of steroids. For once, it appears to be good news, and the steroids haven't caused too much dammage to my bone density. Am still really struggling with stamina and having to go back to bed for a few hours most days. Must be down to the condition as bloods were normal last week.

Clinic today. Bloods now normal....shame I feel anything but normal. They seemed keen to consider increasing the Azathioprine, to see if I could reduce the steroids. The rationale is that as it is prescribed according to bodyweight.... now I'm 8kg heavier (thanks to the steroids) it could be increased and potentially be more effective. So basically, they give me a drug to make me fat in order to increase the other horribly toxic drug. If I hadn't been made so fat it wouldn't be necessary. Not sure how much more of this shit I can take. Despite bloods being normal, I'm to stay on 10mg pred for another 2 weeks....just to be sure. I have asked them to consider budesonide as an alternative to the pred (less side effect and more expensive, so better for me but not the NHS)..they're not keen

Well the job centre was interesting. Very public and very humiliating. It seems my employment support allowance will run out in March, and then I get nothing as I have more than £16000 in savings. I can (and will) apply for PIP payments which are non means tested, but will not be nearly enough to be able to manage on. I know I should be grateful I have savings, but somehow, having worked all my life and paid  all my dues, I foolishly thought the savings might make my old age more comfortable. As always,the harder you work, the less you get, the less you work, the more you get......something has to be wrong somewhere or is it me? Not entitled to a bean until savings are used up. Am feeling so thrilled that this bloody disease decided to join me for the rest of my life, we can grow old and poor together.
Bloods still out of normal range, for repeat Friday, Hosp next Monday. Weight out of control, all mirrors in the house banned.

Haven't written this for weeks! I lost my job on 11th August as expected due to this pain in the arse illness. They couldn't have been nicer about it and said they would be happy to re employ in the future (if I'm ever capable again), so I guess I can't complain. I'm going to anyway. I am sick and tired of this condition.I'm sick of all the tablets...immunosuppressants to calm/control the immune response, steroids to help that, omeprazole to protect my tummy from steroid damage, calcium and alendronic acid to protect bones from steroid damage and potassium to reduce cramp caused by steroids.Then theres the daily ritual of E45 and eurax cream to try and calm my skin(caused by the steroids) and special shampoo/ conditioner to reduce hair loss(caused by the Azathioprine).Oh and of course, making sure I eat at regular times and take a full glass of water with evening meals and Azathioprine to reduce the risk of nausea at night. Then theres the weekly ritual of having to wake early to take the alendronic acid before anything else with a full glass of water, remain upright for one hour to prevent burning my oesophagus. Forgive me, but I like a cup of tea within minutes of waking, not keen on trying to stay awake whilst upright for an hour before I can do anything else.My life is ruled by this condition and there is no escape from it. Bloods  were in the safe area for a whole total of about 6 weeks. They are now climbing again and I've just started the whole bloody merry go round for the 3rd time. Steroids have been increased again and so back to frequent blood tests. If I'm grateful for anything, its that I didn't go back to work, because if I had, I would be off sick again after only 1 month. I never even got to feeling less tired/confused/achy etc before its gone wrong again. So, to pracey, I'm still miserable, itching all over, fat, spotty, achy,have thinning (but now short) hair, and have no sustainable energy. I hate looking in the mirror and all clothes are uncomfortable.Every day is a struggle and a challenge that most days i don't want to take on.
For a bit of variety from all the medical appointments, I now have a letter asking me to attend the job centre to discuss ways of helping me back into work.....what bit of I'M SICK don't they get??? Presumably sick notes from the GP and letters from consultantts and a P45 saying  I've been terminated from my contract on the grounds of capability due to ill health isn't quite clear enough for them.

Today I had a meeting with my manager and human resources. The bottom line is, I am no longer capable of fulfilling my role as a primary care dementia practitioner. This is a role I had longed for, and was enjoying immensely. I am so disappointed. It wouldn't be so bad if I was no good in the role, the problem is that I was, and it gave me great satisfaction to work so closely with those living with dementia, and those families/agencies/surgeries who are supporting them in their homes. I have tried everything I can think of over the past year (I first went sick last August) to get myself back to a normal level of functioning. I have no more weapons left in my armoury. A further meeting will be held on August 11th where my contract will be terminated. My manager has been brilliant, she could not have been more supportive, but I can't fulfill my role when I have constant "steroid brain fog", or feel tired all the time. I don't even feel I look presentable anymore. My skin is itching and rashy, my hair is falling out, and I have spider nevi on my face and neck. I have also gained a stone and a half since all this started. I know it can take between 18 months and 3 years to reach remission, and whilst I am pretty much biochemically in remission, clinical remission seems a long way off. I have no choice but to give in to this and just accept that what will be will be.
The good news is, I saw the eye hospital last week, and whilst I still have raised pressure in my eyes, there is no sign of damage to the optic nerve, so no treatment needed.....yet. I have also seen the dematologist, but due to brain fog, can't remember what she said was wrong with my skin, but it's benign and needs no treatment, just stay out of the sun. Due for bloods next week and hep clinic afterwards.

The reason I haven't posted for a few weeks!

I've been busy helping to hand rear 5 puppies over the last 2-3 weeks. Their mother became very ill during labour, had to have a c section and blood transfusion, and was so ill she was unable to be with/feed her pups. So it's been 2-3 hrly feeding/sterilising bottles/washing......general mayhem in our house since then. They are gorgeous, but we are now beginning to resemble zombies. Next week should be even more fun when they start to be weaned! All this whilst we have 5 dogs of our own and a petcare business to run.  I guess its no surprise that I'm VERY tired and aching all over. I am still having a nap in the afternoon, but the last few days I seem to be hitting a brick wall with exhaustion. My joints ache constantly, and my skin is still driving me mad. I only seem to be able to manage for a few hours at a time, then have to rest. I'm also much slower than I used to be before . I have constant brain fog, and keep forgetting things, and sometimes just can't get the right words out. Steroids have a lot to answer for. I can't seem to stop moaning all the time about how I feel, just wish I could be more positive, but it's really hard when every morning is such a struggle and you feel like you're wading through treacle just to get washed and dressed, never mind doing anything else.

Seen by Proff Cramp today. Pred to stay at 12.5mg for another 3 weeks, then reduce to 10mg.Azathioprine to stay at 75mg. Don't have to go back to clinic (or have bloods done!) for 6 weeks. Everything stable biochemically, so he's happy that things are finally settling. The price to pay however, is all the side effects, which I have to say, I find debilitating. I'm still needing to have bed rest each day, and find I ache constantly and have no stamina. If I push myself and do too much, I have to pay for it for days afterwards. My skin is still a problem, but if I take antihistamines I just fall asleep! I am now finally accepting that this is with me for life, and I will never be my old self again. I will not be well enough to return to my job next month. To perform my role effectively, I need to be able to manage to juggle far more balls than I currently can. It's not just about staying awake/mobile for 4 hrs a day, it requires much more, and I know I just cannot do it.

Alice and Bobbie the donkeys (for Jo)!

Alice is the grey one (10yrs) and Bobbie is her daughter (6yrs). Alice is sporting a liberal covering of sudocrem for treatment of rain scald which she had earlier this year!

This is what you look/feel like when you eat too much spring grass in one go..............or did Kaspar steal my steroids??!!
Things going ok except for intolerable itching. This only started about 2 weeks ago, and is largely on my forearms, but also neck/trunk. Not sure if it's to do with increased Aza? Or photo sensitivity from the aza? Colleen suggested eurax cream, which is brilliant, but would like to know the cause, and why now if its the aza? Had been using factor 30 on anything exposed from the minute the sun came through a few weeks ago. Come on Jo...........you always have the answers!!!

Well it turns out that the blood results that were given to me yesterday were from a previous date.............not the 16th after all! So, when seen in clinic today, fearing the worst, I was pleasantly surprised to be told that in fact, my bloods are nearly normal, and only slightly in the red now!! I had spent 24hrs convinced it was all going wrong again. As it is, they have agreed to reduce the pred a tiny bit to 12.5mg, and leave the azathioprine at 75mg. I don't have to have bloods or be seen for 3 weeks....hooray. Very relieved by the news....so treated myself to treacle tart for tea tonight.

Ok........why is it that when there is 9 miles of beach, they have to sit on top of you????!!
Had a lovely break in Dorset, lots of walks and lots of rest. All over too soon, although always good to be home.
Had bloods done just before we went on 16th. had them done again today, and the results of the 16th were really bad news......ALT rising again and back up to 79. Will get todays results tomorrow in clinic........can't say I'm looking forward to it. I'm still on 15mg pred and 75mg Aza. My skin is itching all over and forearms covered in marks/discolouration. Another tooth broke yesterday (thank god they have been back teeth!) Joints ache and am very tired, but hey...............no nausea. Face looks like a hampster, hair falling out etc etc etc....... could live with all of this if the drugs were doing what they are supposed to be doing. Just can't stand this constant battle with endless side effects when there doesn't seem to be any benefit. Once again, am in this nightmare of not being able to plan. I thought I was back on track, and am supposed to be going back to work in about 5 weeks....come on Jo....tell me it's all gonna be alright!?

Well.........The sun has got his hat on....hip hip hip hooray!!! Lovely in Cornwall today. Feeling a bit tired and achy, but nausea only lasted a few days when the Aza was increased, so VERY happy with that. Bloods on Friday, then speaking on the phone to hepatology on Monday as I will be away in Dorset for a week.............more Hoorays!! My lovely sister will be in charge of naughty donkeys and left behind dogs, as we spend a week sleeping, eating and playing with the three that are coming with us. Can't wait, seems like forever since we had a break. The last holiday was cancelled as I was so unwell/in hosp. So much has happened since then, and none of it has been good.

Ok.............not keen on the increase dose of aza so far. Have been very nauseous and upset stomach on and off since Weds night. Today, I had to attend a review meeting with work at 9.30 am, which meant getting out the house at 8.45am with no breakfast (couldn't tolerate) and feeling very sick and teary on the drive there. However, managed to wing it and convince them all was well, and I remain on course for a phased return in July. They have been incredibly supportive and patient with me, I'm determined this is going to work this time. They are even willing to change my base to reduce my driving and are happy for me to aim for just mornings initially. Am sticking as much as possible to my rests in the afternoon, and if I really don't have time, I do a meditation for 20 mins which seems to work well too. Diet is a bit haywire at present, but I think thats due to the increased aza, which will hopefully settle down soon. Considering the sort of few weeks I've had, I'm amazed I'm doing as well as I am....really can't complain.

Seen by proff Cramp in clinic this morning. LFT's still abnormal, so prednisolone to remain at 15mg for a further 3weeks, and Azathioprine to be increased to 75mg daily from tonight. He is aiming for me to be on 100mg aza eventually. I'm not thrilled. I was under the impression from the consultants that they would aim to keep me on 50mg aza as maintenance dose (I know this is low, it should be 1-2mg per kilo of body weight, and I weigh 62kg)its just that last time (Oct/Nov) I was on 75mg, I became very unwell. I'm scared. I have a plan for return to work 1st July which is only 7 weeks away. This time will be make or break as far as my job goes. At the moment, I don't feel too bad. I have a strict regime of diet/rest etc and it seems to be working. I hadn't realised that there were a load of other tests that were still abnormal, I had only been concentrating on the AST/ALT. He won't reduce the pred until the aza is doing more of the preds work, and even then it will only be by 2.5mg at a time. So from tonight, I risk nausea etc again, he say's to ring if it's unmanageable................not sure what plan b will be if that happens.

Well I haven't written this for a while due to one thing and another. Over the last few weeks, we have been literally so busy, I just haven't had the time to do anything but essential stuff. I have, however, done my best to stick to the afternoon naps and the healthy (ish) diet. My latest bloods were really positive, with AST at 58 and ALT at 57!!! No major, unmanageable side effect from the azathioprine, which is now at 50mg daily. The pred is down to 15mg daily since Thursday, and I don't have to have bloods or be seen for 2 weeks!!! So all in all, everything is rather positive on the AIH front.
However, very sadly, my Mother on law passed away yesterday morning. She had been unwell for only a week, but they hadn't been able to reach a diagnosis. Unfortunately, on Thursday evening, she was taken to hospital, and they found the cause, but there was nothing that could be actively done. She died peacefully and pain free with all her family around her. To say there will be an enormous hole in our lives and hearts would be an understatement. We are totally bereft and can't imagine life without her.

Lovely sunny day again in Cornwall. Feeling a bit better and have a little more energy today. ALT now 79 (even with only 25mg pred!) They have reduced it to 20mg from tomorrow, and to stay on Aza 50mg for now. Bloods again next Tuesday and to be seen again next Weds 23rd. Thats 3 blood tests in arow that haven't risen.....dare I hope we have turned the corner? I certainly feel a bit better, apart from the never ending cramps in fingers/toes. The routine of having an afternoon nap is the way to go I think. Just have to be really strict and make myself have the rest even if there are other things to do (always!). Vit D results are fine, so I guess the only reason for the cramp is the steroids flushing the potassium out my body, hopefully as the steroids come down this will improve. Heard from the eye hospital re: increased pressure, apparently I won't get an appointment until at least June.......the referral is marked urgent, but apparently they don't view glaucoma tests as urgent....give me strength!!!!

So let me see.....on the negative side..

I have a life long condition that I will have to learn to live with
I've had at least 50 blood tests since last September
My new occupation is attending clinics/obsessing about my condition
I have gained weight
My clothes don't fit
I have a hairy face
My hair is falling out
I look like a hamster
I am covered in bruises
My joints ache most mornings
I'm tired often and have little stamina
I have cramp often
I have glucose in my urine
I have raised intra ocular pressure
I have stomach/reflux problems
My sleep is disturbed
I have URQ discomfort all the time
My bones are at risk of fractures
I've been off work for 9mths...and counting
I'm on a benefit for the first time in my life

On the positive side....

I'm alive
My bloods are improving slowly, so risk of cirrhosis is lessening
I have drugs to counter most of the side effects of the steroids (although they also have side effects!)
I have a lovely home/partner/son/family who are putting up with my moaning
I might just make it back to work in July after all

Had the increased dose of aza last night..........fine until about 10pm, then nausea kicked in. Very little sleep. Had to go back to bed this morning as I was so tired. Got up again at lunchtime and felt fine again! Glorious sunshine in Cornwall today, such a pleasure after days of rain/fog/wet dogs/miserable donkeys!! Spent the afternoon with the donks re doing their electric fencing to create a new paddock for them to play in. They looked on in anticipation waiting to be let out, then went wild inspecting the new area. I have just been down to bring them in and found them climbing right up on the stone wall between us and a housing estate.....peering into peoples kitchen windows! They have acres to play in and they still have to be naughty....it took carrots and ginger biscuits to persuade them to come in for the night.
Am hoping the nausea is less tonight, last week, it only lasted a few days then settled down again. Oh, nearly forgot, went to the dentist today and my teeth are fine...............at least thats one bit of me thats not going wrong!

Seen in clinic this afternoon. Bloods remain stubbornly the same. No result on the vit d yet. They have reduced the pred to 25mg from tomorrow, but doubled the azathioprine to 50mg , so I guess I can expect some more nausea (just as I had got over it!). Hair already falling out again, and only back on it 1 week. I have actually been feeling much better the last few days, despite seriously overdoing things on Saturday.
Any of you that haven't had your phosphate levels checked might want to. Mine have been very low on and off since November. I didn't realise (and they didn't join the dots up either) that one of the main issues with low phosphate is lethargy/tiredness. Every week that I'm seen I say how tired I am, I can't believe they didn't think to explain this, or to prescribe phosphate sooner. I'm hoping that the improvement I've had this week is as a result of the twice daily (tastes foul) effervescent supplement I'm now on. I know it's wishful thinking, and I know tiredness is one of the main features of this condition,but wouldn't it be wonderful if something so simple makes a difference?

Have taken 3 doses of aza now, and had forgotten how nauseous it makes you feel. Had to go back to bed for a few hours this morning as I felt so rough. I thought taking it in the evening would be better (less disruptive if I EVER get back to work), but have found myself feeling very sick by 9-10pm. I'm only on 25mg too. Had planned a nice catch up with a friend this morning but had to cancel. Better this afternoon but still feel shattered and cramp in fingers/toes really annoying. Think I will just not answer the phone on Friday if they ring to increase the steroids.........if they can't speak to me, I won't know that they want it increasing will I??

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.

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.

Oh dear God, I haven't had the time or the energy to write this since Monday. Work has nearly killed me, but I've managed to keep all appointments/meetings (even if I look shocking)! Am seriously wrecked and just hoping that bloods start to settle again on increased steroids. Every muscle/bone in my body hurts.Driving down the A30 at 8.15 this morning whilst trying not to throw up was not pleasant. Don't remember feeling this tired since I worked nights and had to look after my son the next day............and I was young then!!! M has been brilliant, encouraging me and preparing healthy meals for when I fall through the door at the end of the day. 2 appointments tomorrow afternoon, then REST over weekend. This HAS to get easier soon

I got back today from a lovely restful weekend in a friends barn conversion on Dartmoor. Nothing to be heard but the stream and the owls. Very peaceful, and gave me time to relax and be alone (except for the 2 dags I took with me)! Sadly, I went to hep clinic this afternoon and my liver enzymes are still rising, and in fact had gone up by as much as 2/3rds since last week. This despite increased medication over the last 2 weeks. Consequently, my steroids have now been doubled (oh joy, more hair in the wrong places, bruising, spots and an even fatter arse). They think its a flare and think the steroids will get things back under control. I confess I wept. It seems so unfair, I'm trying everything to beat this (ok not everything I'm still smoking), I live on healthy veg/fruit /nuts, I rest,don't drink alcohol, drink water and herbal tea, have had Reiki, bought meditation cd's, had a weekend relaxing retreat, take all prescribes meds as I should, am planning appts in the afternoons and typing notes in the evenings so I can get going gradually in the mornings.....................I this is what I get in return. well I guess they did say remission can take 18mths -3yrs, the trouble is, at what cost? Bloods again Friday, clinic again Monday..........and so it goes on..........

Well work was interesting! Only had a few hours sleep last night due to nausea, so started the day feeling like death. My first patient opened her door and announced I looked dreadful, then asked if I should be out and about yet...........cue big smile, lots of lies about being just fine, and on with the assessment. At the second visit, I spent half the time distracted with whether or not I would make it to the end without throwing up. Dreadful weather in Cornwall so horrid drive home. First visit tomorrow is at 10.30 am.......should be looking and feeling great at that time!

Seen in clinic. Well, bloods continue to go in the wrong direction. The reason I'm so tired and achy etc is either that I'm experiencing a flare up or it's drug side effects. The consultant decided to increase everything in the hope that it gets back under control. So now I'm on 750mg mycophenolate twice a day and prednisolone back up to 10 mg. I'm between a rock and a hard place, either it will all improve in the next week, or things will get much worse.......no way of knowing. Bloods again Friday and clinic again next Monday. Am seriously pissed off with the whole thing. Have to work tomorrow weds and Friday, should be interesting.

Really struggled this week with work. Just can't get going in the morning, but seem to improve by the afternoon /evening. Still getting cramp and have had lots of joint pain over the last week. Not sure if this is side effects. Got called back to give another blood sample on Wednesday this week (not sure why, but apparently the hepatologist asked for repeat mycophenolate level). Clinic Monday, so I guess all will be revealed!

Still finding mornings really difficult. Not sleeping well and then groggy and tired till at least mid afternoon. Have started getting cramps in feet/toes again, and discomfort in liver area. Not back to clinic until 20th, so will know how the mycophenolate is performing then. No longer nauseous and hair loss not so evident, but could really do with some energy!!!

Bit of a struggle to get going this morning, but seemed to improve as the day wore on again. Went to work, found it tiring but ok, and can't wait to get stuck back in properly next week. No nausea again today. Bloods tomorrow...restful weekend then back in work Tuesday all being well.

Slept like a log, but woke feeling exhausted and irritable. Got myself in a state in Tescos this morning when I had chosen the checkout with a newly trained member of staff. Became irrationally irritable at having to ask for bags (repeatedly) then having to wait as she couldn't work out how to weigh my fruit and veg. The final straw was her inability to take my discounts off with the tokens I handed in.............I tried to be patient.........didn't work. Mood and energy improved as the day went on, but still needed a lay down at lunchtime. Not nauseous today! Hooray!

Woke up feeling very tired and woozy today...........not what I wanted on my return to work! However, I made it in this afternoon, and began the painful task of wading through emails and my case list to try to catch up /prioritise work. Felt utterly exhausted after just 2 hours at a computer. I'm sure I'll feel more positive next week when I get out to see patients again though. Donkeys had to go to bed in the dark tonight....don't think they were very impressed! Off to bed shortly, day off tomorrow, then in again Thursday.

I got carried away with last weeks improvement and have been generally unwell for the last 3-4 days. Very nauseous after taking the mofetil, muscle/joint pain, tiredness, disturbed sleep, muzzy headed again. Was seen in clinic this afternoon by Proff Cramp, who had intended increasing the mofetil, but has decided to leave it a bit longer to see if I tolerate it better. Instead, he has increased the steroids a bit to help me over the immunosuppressant changes (or as the hepatologists like to call them "the steroid sparing drugs")! The bloods I had done on Friday have gone up a bit again, so hopefully the steroid increase will address that. Bloods agin Friday, review again in 2 weeks in clinic.
I am starting back at work tomorrow on a phased return. I had been feeling really positive about it, but have to say my confidence has been shaken a bit by how unwell I have been feeling. I am keen to try to regain some normality and to be distracted from this all consuming condition. I'm so sick and tired of it and it dominating everything I do. I wish it would just go away.... but know that it never will.

Have now been on mycophenolate mofetil since Tuesday morning, and can report feeling HUGELY better!!! New energy, less grey faced and saggy eyes etc. Only noticeable side effect so far is nausea 1-2 hours after each dose. My head feels clearer and I seem more able to get things done without utter exhaustion. I know its early days and I mustn't get too excited, but the signs are all good so far. My gp has signed me back to work on phased return next week, and I saw my manager today who was incredibly supportive and has worked out a manageable plan, starting with just 2 afternoons next week. Bloods again tomorrow and hospital again Monday for results. Maybe a Happy New Year after all.