Auto Immune Hepatitis

[DebbyJ1]

hi I am new here diagnosis in July

Would love to connect with people with this disease

Hear stories of ups & downs

I need so much information and have lots of questions

Thank you

[AyrshireK]

The British Liver Trust has a page dedicated to AIH at:- britishlivertrust.org.uk/in...

The page had lots of input by patient members of AIH Support UK who as well as there own website also have a very active Facebook group with almost 4000 members all of whom are fellow AIH patients (at various stages of their journey) or like me are loved ones of patients. It's a private group so no one else on your Facebook can see wgars posted there. Details of AIH Support at:- aihsupport.org.uk/

AIH whilst a life long condition can akso be very much controlled once they get your medication regime sorted.

Best wishes, Katie

[DebbyJ1 in reply to AyrshireK]

Thank you yes I’ve asked to join FB group I’m pending !! I will look at dedicated link

[Readlots]

Hi Debby, I have AIH as well as a couple of other liver diseases. I was diagnosed in 2012. I started on Azathioprine straight away. I didn’t take steroids because I was worried I’d put on weight, seems ironic now. I have had a couple of short courses of steroids when I’ve had flare ups and they have helped bring my symptoms and blood results under control. My main symptom is fatigue but generallyI manage to pace myself to manage my energy levels. I worked full time until last year when I took a year off. I’m now working part time and life is good. Feel free to message me if you want to talk

[DebbyJ1 in reply to Readlots]

Thank you that’s very kind I wasn’t given any choice over steroids as was told they were a mild suppressant as well so would help initially until my biopsy results confirmed auto immune and my TPMT were at acceptable level

How do you manage with work ?

[AyrshireK in reply to DebbyJ1]

Steroids act as a fire extinguisher to put out the fire / bring down the initial inflammation. Immune suppressants are then added and they act like a sprinkler system, tamping down the immune system to prevent the fire/inflammation from re-igniting.

Katie

[DebbyJ1 in reply to AyrshireK]

Brilliant what a great explanation

I might use that thank you

[Readlots in reply to DebbyJ1]

I’ve always been very open and honest with work about my health. I’ve been lucky in having great managers who have taken the time to listen and understand how the illnesses affect me and what I need to be able to work at my best. I’ve always put the emphasis on me being able to do a good job, because that’s what they want too.

All three of my managers since diagnosis have been open to flexible working and working from home so that I don’t waste energy travelling. One used to say “ I don’t care where or when you work as long as the job gets done”. That level of flexibility takes incredible trust but he knew that I put in the hours and that I delivered. I always told him what was going on. If I’d overstretched myself I’d tell him and tell him that, and what I needed to do to recover. I took ownership of the problem and the solution. I paced myself by booking and taking regular holidays, not building up too much overtime, blocking out time in my diary so that I didn’t have late afternoon meetings. I do important tasks in the morning when I’m at my best. I don’t send emails after 3pm. I leave them in draft and check them in the morning when I’m fresh because I know I will have made mistakes. After 3pm is for routine admin that doesn’t matter so much. Obviously there are times when this isn’t possible, but I tried to put boundaries in place and stick to them.

We had a WAP (work adjustment plan) in place which documented my condition, how it affected me and what ‘reasonable adjustments’ had been agreed. This included an extension to the ‘trigger points’ for sickness absence and paid time off for medical appointments, as well as the flexible working arrangements. I realise that not all employers have these but it’s worth suggesting. Acas and Citizens Advice have guidance and templates. I hope this helps

[DebbyJ1 in reply to Readlots]

Thank you that is very useful info

I know my employers value and trust me however because of my role in primary school I cannot work from home and to have a flexible schedule of work would not really work in that environment mainly for them

I do know about a plan but I’m not sure I could ask for them to apply it as it would be difficult 😞

It’s such a mess 😢

[Readlots in reply to DebbyJ1]

It’s so difficult if you work in a school. There may be some flexibility around the extra stuff you’re expected to do eg staff meetings, evening events etc. You could ask for an exemption from attendance as a “reasonable adjustment for a disability’”. Additional non contact time to do planning and preparation.? No doubt they’ll throw in the phrase ‘the children have to come first’. This is the emotional blackmail headteachers often use. You’ll have to make yourself immune to that. If they don’t look after you, and you don’t put yourself first, you can’t look after the kids.

If you aren’t already a member of a union it might be worth thinking about. They’ll know what other people have arranged. It’s also worth requesting an occupational health assessment. They will probably say that PBC might be a disability under the Equality Act 2010, and that gives you protection against unfair treatment and means they have to give you reasonable adjustments.

Sometimes you have to think creatively. It might be about having good systems in place that save energy. Asking children to help fetch and carry. Minimising the things you need to do after school. Delegating. Not taking on extra. Stepping back when they ask for volunteers. And making sure your manager knows why you’re doing it, you’re not being bolshy. But also making sure they still give you opportunities but you’re in charge of when and how you can do the extras. Sometimes you have to change jobs. But if you love it you’ll find a way. Good luck😊

[DebbyJ1 in reply to Readlots]

I have now joined unison thank you

[Jay_89]

Hi

I got my diagnosis of AIH around 2019. Family history of PBC on my mums side.

I started to feel unwell at the age of 21, (2011). Very fatigued, jaundiced, dull ache in my abdomen. Elevated LFTs etc, I got diagnosed with Sphincter of Oddi Dysfunction. I had a few ultrasounds, Kidneys, Liver/bile tract etc, at this time I was diagnosed with Gilbert's syndrome too, we left it here, as the option was to either cut the sphincter or have a botox injection, neither promised a solution but did carry a high risk of acute pancreatitis, so we decided against it.

Following on as the years progressed, I was becoming increasingly unwell, low mood, very fatigued now, eating was a challenge, I had constant D+ and was regularly vomiting bile every morning, I was getting quite desperate. I'd been back and forth from my GP/Hospital for the past couple of years.

To cut a long story short, we ended up doing a process of elimination (I had my gall bladder removed) premise being, this could stop the pain, it would reduce the inflammation causing my LFT's to be high, nausea etc. So we did it. (I had a liver biopsy at the same-time)

12 months ago by of monitoring, still no improvement on the LFTs, still symptomatic, still unwell. I was now 29 and living in what I felt was an old mans body. Biopsy showed markers for AIH.

Just while covid was whirling in the papers (still just starting in china) I'd fallen horrifically unwell at work, I ended up in A+E and my LFTs where off the chart 300+, I had a severe biliary infection and felt horrific. Another internal Ultrasound (lost count of how many I've had of those) and a course of Antibiotics, and a 7 night stay on the ward.

Unfortunately up to this point in time, I'd been under an extremely arrogant Liver specialist at the RLUH, who refused to take into account my family history, stating I was the wrong age, sex and my bloods weren't characteristic of AIH. I'd had a biopsy of my liver at the time of my gallbladder removal which was also positive for AIH.

Desperate once I was out of hospital I saw a Liver specialist at the spire, who just turned my life around, he looked over my history and within ten minutes was convinced I had AIH, and that having Gilberts syndrome was what was throwing my bloods into the 'uncharacteristic'

Repeat liver biopsy x2 samples from different areas (again positive for AIH) bloods, starting on prednisolone (yes lots of weight gain) and azathioprine, everything started to drop within normal ranges, I'm a different person, I feel like I've had a new lease of life, I still get the odd flare up, my bloods are regularly monitored, they have elevated a tiny bit since, but all in all after nearly a decade of nonsense I'm doing really well.

Ive had to make dietary changes since losing my gallbladder, very intolerant to fats and I don't drink at all. I have some damage to my pancreas after all the inflammation over the years too, but otherwise on the med's you wouldn't know.

[Readlots in reply to Jay_89]

Wow, Jay! Hearing your story I realise how lucky I’ve been. My Mum had PBC. I had the same symptoms. My GP referred and my Mum’s consultant picked it up. I had a liver biopsy which confirmed AIH, then later PBC crossover. Straight onto Azathioprine. I was picked up relatively young and they caught it early. I’m sorry to hear you had such a hard time getting a diagnosis.

[AIHinSantaCruz]

I can add that you might want to join the AutoImmune Association support groups - I'm newly diagnosed and have benefited from joining the 'newly diagnosed' group which meets quarterly and also the 'west coast' group which meets monthly. I don't know where you live... I'm in the US and the person who you'd contact to sign up is Megan and her email address is: [e-mail]