Advice needed

[Nessa0121]

Hi,

I'm at a complete loss. My mother in law was just diagnosed with autoimmune hepatitis. She also has mental problems so she's not fully capable of understanding or asking what she needs to. My sweet hubby is completely overwhelmed and isn't sure what he needs to know. So I'm hoping to get some advice and information here.

First of all what are typical symptoms? She is hurting all over and struggling to walk, is this a possible symptom or more likely to be unrelated?

What questions should we be asking the doctors?

Any help is greatly appreciated. Thanks

[AyrshireK]

Hi Nessa, if you use Facebook at all there is a very active AIH Specific page on there. It's a closed group so no one outside of the group can see what is being posted and all the members are either patients with AIH or carers like myself. You'd get great advice there and the group often has meet ups across the UK supported from some of the top doctors (and now a professor of Auto Immune Liver Disease).

Page is at :- facebook.com/groups/AIHorgUK/ The same group also has a support forum although the facebook page is more active (forum is at :- supportaih.websitetoolbox.com/ ).

Many people do seem to suffer numerous aches and pains with AIH and fatigue is a common issue for most patients (but not all).

You need to know about the treatment plan. Most folks get started on a fairly high dose of steroid - usually prednisolone to control any liver inflammation. Pred has a lot of unpleasant side effects sadly including effects on mood, weight gain, risk of steroid induced diabetes, risk of bone thinning. Some folks get to use alternative steroids such as Budnisone though folks with cirrhosis due to AIH can't take this.

Over time the pred is usually reduced as blood number calm down and usually gets replaced with an immune suppressant which will then keep the immune system in check so that it doesn't continue to attack the liver. Azathioprine is normally the first of these which is tried though there are others.

You'll get much more advice and support from AIHorgUK from patients who have gone through the whole scenario. For my part I am caring for my hubby who has cirrhosis of the liver due to AIH though his was only discovered after it had done it's worst and he already had chronic cirrhosis symptoms.

The important thing to remember with AIH is that whilst it can't be cured it can be controlled for the most part by a drug regime, some folks live entirely normal lives with it. Ok some don't but try and keep positive.

All the best to you all.

Katie

[Nessa0121 in reply to AyrshireK]

Thanks Katie. I'll check out the FB page.

[Bolly in reply to Nessa0121]

Like Katie I'm on the Facebook page. You need to register to be able to see anything, as it's a closed group.

[Cliff6ts]

I also have AiH. When initially ill many of us are confused. It is a symptom that goes away.

fatigue is a major symptom as are aching joints.

if you have a facebook account look to join the group

AIHorgUK

[Bolly]

Ideally she needs a hepatologist who will treat her along these lines (recommended by a specialist in AIH)

"Initial treatment is with steroids – either prednisolone or budesonide. This acts like a fire extinguisher to put out the flames of the inflammation.

Then an immunosuppressant is introduced which works like a sprinkler system to prevent a flare up.

The immunosuppressant most commonly used is azathioprine. If people can’t take azathioprine then other drugs that work in the same way include mercaptopurine.

Most people need to be on a maintenance dose long term and the majority need lifelong treatment.

It's common to start the patient on 20 – 30 mg of prednisolone (or 9mg of budeonside in patients without cirrhosis in whom steroid side effects are a concern). Azathioprine is added about 4 weeks later so long as patient is responding to steroid treatment and bilirubin is below a certain level. Depending on response, steroids are tapered down to 10mg a day and if everything normal at 6 months prednisolone is reduced again. The patient stays on steroids for about 12-18 months but on azathioprine (or similar) for life."

Every patient should be treated as an individual depending on how they respond to the treatment and the level of liver damage, but this plan is a good one to start from.