First post

[Hope1011]

Hi all, this is my first post. Thank you admin for excepting my request.

A little about myself. I’ve just turned 50. 5 years ago I had key hole surgery to remove fibroids. The op went well but few days later I had an infection and was treated in hospital. They did intravenous therapy (antibiotics through veins). This happened in 2014 but that whole year I didn’t feel well. In fact I was bed bound. I kept on getting high temp and sweats. In 2015 I was diagnosed with autoimmune hepatitis and was treated with steroids. The steroids made me feel better but I ballooned up. I started on 30mg steroids and cut down to 5mg. Then 2.5mg. However, the alt etc went up and I was then prescribed a larger dose. This carried on happening for couple of years (up down up down). I have been on steroids since 2015. Recent scan showed lots of scarring as well. (I am ideal weight).

Anyway, I was later prescribed an immunosuppressant which didn’t agree with me so the doctor asked me to stop taking the medication. Few weeks later he tried me on another one, azathioprine. Which resulted in Severe leukopenia.

DIAGNOSES:

1. Type 1 autoimmune hepatitis - non-cirrhotic on liver biopsy in 2015. (Now they say I have lots of scarring)

A. Moderate, bridging fibrosis.

B. FibroScan in January 2018 stiffness score 18.3 kPa with IQR 4 and CAP 221.

2. Severe leukopenia on Azathioprine.

3. Transaminitis on MMF.

4. Throat infection on Tacrolimus.

5. Steroid responsive.

Last week I’ve been prescribed another tablet, Mycophenolic acid (Ceptava)which I am really scared about taking this. Since taking this tablet, my whole body is aching like you do a workout and the next day your body starts aching. My throat feels ticklish and sometimes I feel a little feverish too but mostly tired and exhausted even after a small task.

Currently, I’m taking 5mg steroids and blood test are normal. AST 37, ALT 34, BILI 9 and GGT 35 Last time the alt was shot up too nearly 400 from 23. I don’t understand what triggers it.

One of the things which I feel helps is to cut down processed sugar and food.

I will really appreciate any advice. Thank you in advance everyone!

[Ocean_ovna]

Hi,

It is not clear what advice is needed. A high fibroscan can be with inflammation of the liver. Although it may be more informative than a biopsy. Are scars visible on an ultrasound scan? A biopsy is not always informative. The time factor also needs to be considered. Are there symptoms of a portal hypertension or liver failure? It’s good that biochemical parameters are normal.

[Hope1011 in reply to Ocean_ovna]

Hello Ocean_ovna,

To be honest I still haven’t understood the extent of my condition. If the blood tests show normal function then I don’t understand why I need to take the immunosuppressive, which always makes me more ill then I am. When your blood tests are normal, Is it possible to stay okay without taking the tablets?

[Ocean_ovna in reply to Hope1011]

Hope1011, Autoimmune hepatitis is a chronic disease, so you can’t completely refuse treatment. The doctor can check the dose of medicine for your specific situation.

[Hidden]

Hello Hope, I also have AIH but have only had diagnosis since February although have been ill for over 12 months.

For me I find stress is the trigger for flare up.. I now have managed to bring life back to relaxed slower pace.

Also I have great AIH consultants

Wishing you well

Sudio

[AyrshireK]

Hi Hope, I know that on the AIH UK support group Facebook page there are numerous members for whom finding the right immune suppressant proved difficult. If you do Facebook at all you will find great support from fellow AIH patients at facebook.com/groups/AIHorgUK/ . Over 2000 members world wide, all of whom have AIH themselves or like myself are supporting loved ones with the condition. Supported by some of the top doctors in the UK who are working in the field of Autoimmune Hepatitis research and treatment.

You'd find a warm welcome there and support/advice re. meds and coping with the side effects of meds.

All the best, Katie

[Hope1011 in reply to AyrshireK]

Thank you Katie, that is very useful to know. I will join the group as well.

[mayohiii]

Welcome Hope1011,You are in the right place.Sounds like you are having a tough time,my thoughts and prayers are with you.This is a great forum people here are very nice and helpful,keep coming back.God Bless

[Hope1011]

Hi mayohiii,

Thank you so much!

Hope

[Kristian]

Hi Hope,

As with most autoimmune conditions AIH can operate in "flares". Basically some days its active others it's not. That's a bit of an over simplification but I'm sure you can get what I'm getting at. The immune suppressant are there to really just try and calm down your immune system a bit so you perhaps have less flares, or less active flares than you may otherwise have. I suppose it's a bit about damage limitation. Same thing with the steroids, but they also have a good action on acute phase things too. The fact that your latest tests are reasonably good shows at least the medication is doing something for you, and that's probably the intention. However, there are always occasions where some of the side effects are a bit intolerable at times. So it's a case of just trying to find what minimises those but still helps reduce the damage done by the disease you have. Sometimes that's difficult to achieve and changes have to be made on numerous occasions to find the right balance. I'm afraid you just have to keep working with your medical team to find what that balance is for you. Do though raise with them the issues you are having. They may be able to make changes without you having to wait for your next appointment. I found I could usually do that through my GP who would consult on with my liver/gastro team as needed. However, you may be able to do it direct.

[wildlifegal]

No advice. But a hearty welcome to our little community. You will be safe and supported here.

[Hope1011 in reply to wildlifegal]

Thank you!

[Hidden]

Welcome to the forum, you will be well supported here by your fellow forum users.

regards

[Hope1011 in reply to Hidden]

Thank you!!