Well, tomorrow is d_day. I had my third liver biopsy on 16 July and should get the results tomorrow. I am expecting a resumption of steroids and an increase in azathioprine. I have only been off steroids since March, having been on them solidly since diagnosis in September 2013. I have only lost a stone of the two stone the drugs made me gain. My skin has barely recovered from steroid damage,and I may never recover from having developed fibromyalgia due to the steroids buggering up my sleep!! I could so do with them saying it's all a mistake and the fibroscan was inaccurate!!

Well it's been months since I last wrote this. Things had been going well. My liver blood tests have been in normal range for months, and I have finally learnt to accept this disease, and all that goes with it. I have also been diagnosed with fibromyalgia....but that's another story. Today I saw my consultant and had the rug pulled out from under my feet. I had thought that if my bloods were in range then no more damage to my liver was occurring. What I hadn't realised (or ever been told) was that all the bloods show is how well the liver is functioning. They do not show what damage is being done to the liver itself. However, having a fibroscan does show whether or not fibrosis is present. A normal healthy liver should not score above 4, mine scores between 9-11. This means I have fibrosis, and will now have to have another liver biopsy to see the extent of the dammage.
I feel like all my markers I have been following are gone. The bloods do not tell the whole story, I feel conned and confused. I also feel terrified of the biopsy as the last one was so painful. If the biopsy shows what the consultant suspects, then she will begin to treat me far more aggressively. This means my Azathioprine will be increased.....the drug I hate most with the most side effects.....

Well, am now signed up for JSA. All I have to do is look online 3times a week for a job within 5 miles of home, the job has to be no more than 2hours a day, and have regular breaks. Oh , and i have to be able to sit down too......don't think there will be many of them around.....

Hooray!! At last , recognition that I am unwell. Today I got the welcome news that I will be getting paid personal independence payments (pip)!! It's not a lot, but am truly grateful for it. The idea is, that as someone with a disability, we have expenses to pay that other "well" people don't; i.e frequent trips to hospital, hospital parking, prescription charges for so many drugs etc. It will make a big difference.....at last something positive to say!

I really don't know where to start. I was diagnosed Sept 13, finally lost my dream job in Aug 14, and had been on employment support allowance (£70 per week) from March 2014. This benefit is only paid for a total of 12 months, so was stopped in March this year. When you are put on this benefit due to illness, you are supposed to have a "health assessment" within 13 weeks of starting it. Atos, the company responsible for this, did not do my health assessment until 15th May this year (2 months after the benefit ran out!). This week, I recieved the report from them, that says that I am fit to work, and should start looking for a job straight away. Apparently, the "work coach" at the local job centre will tell me what work I am able to do. Only one problem, I remain signed off as unfit for work.....because obviously (to most people) having a life long chronic disease, that depends on complex medication and monitoring, means I'm not fit to work. I am intrigued to know, what job I can do which will allow me to
1 only turn up on days when I am able to get out of bed
2 let me have a two hour sleep every afternoon
3 let me drink/sit/stand/go to the loo whenever I need to
4 take time off for blood tests weekly, hepatology appts liver biopsies/scans bone scans/ eye hospital appts rhematology appts etc
5 take down phone messages incorrectly (due to brain fog)
6 burst into tears due to pain/frustration/anger at the whole thing
7 rest my oedematous legs whenever I need to?

Any suggestions/offers greatly received.

I shall, of course be requesting a reconsideration, and if still unsuccessful will appeal. The trouble with this condition is, hardly anyone has heard of it, research is limited as so few of us have it. I feel like I am constantly having to justify my situation to complete jobsworths . As if coping /living with it isn't enough, we should not have the added pressure of constantly jusifying it's effects.
I really don't see, why having worked and contibuted for 30 years, I should have to face this indignity.

Can't believe I haven't written anything since January! Thats not to say that nothing is happening, it's just all become such an effort to stay positive, I didn't want to keep writing such negative stuff. Thought it was better not to write at all. However, today I experienced one of the worse times since diagnosis. I went for an appointment at the Eye Hospital in Plymouth. I was referred last year as the steroids had caused my eye pressures to rise, so they wanted to monitor in case of further damage. I had seen my own optician a few weeks ago, so already knew things were still not right. Today, they confirmed that pressures are still up. But that wasn't the problem. The doctor I saw asked why I was on steroids. So like the idiot I am, I told him, I have auto immune hepatitis. His response? "Oh dear" in a rather grave voice, so I thought, blimey, he's actually heard of it! But no. The next question was "did you have a blood transfusion ?" Me.."No...it's an auto immune condition". Him..."well did you inherit it?" Me.."No...it's an auto immune condition, my immune system decided my liver was an alien and began to kill it". Him..."well were you a heavy drinker then?" Me...." No....it's an auto immune condition" Him..."I know...but I thought maybe drinking caused it". Me....silence....I knew it would be tears or explosion. Him..." do you work?" Me..."not anymore...I can't because of my condition" Him.... "well what did you used to do? Me.... I've been a mental health nurse for 30 years. Him.."well never mind,  you know from your nursing that things will get better in the future". I couldn't speak anymore to explain that it is a chronic life long condition that I will never be free of.I cried all the way home.

Well, the gp shouldn't have put me on Meloxicam. As I thought, I'm not supposed to have ANY nsaids, and my blood pressure was high. Hepatologist was horrified. All the gp had to do was check with them first, instead, he persuaded me it was safe. I will never take any presciption from the gp again unless they check with the hep team first. So, it's back to paracetamol/codeine or tramadol if I want pain releif, or nothing if I want to stay awake. Liver bloods thankfully still normal and negative for reumatoid arthritis. So the pain is "just the AIH"......thats ok then isn't it?

Getting lazy and forgetting to write this blog .My bloods are still in range and we're now almost at the 18mth mark since diagnosis. All signs are good for remission. Unfortunately, symptoms remain the same, permenantly tired etc. For the last few weeks, the level of joint pain has increased and paracetamol /cocodamol hasn't touched it. I finally relented and saw a doctor on Saturday. He's thinking rheumatoid arthritis , another autoimmune condition which often goes withAIH. I have to have xrays, and more bloods done.he's also put me on meloxicam to try to calm things down.....very nervous (what's new) about this as its an nsaid which I thought I wasn't safe to have....he assures me its fine .and has increased the omeprazole to protect my stomach... Ihave to say my joints do feel a bit better though. Bloods on Fri this week and clinic next Monday. Keeping everything crossed!

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.