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.