fuddle'd spud: I have auto immune... - British Liver Trust

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fuddle'd spud

BigSpuds profile image
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I have auto immune hepatitis. I wonder does anyone know why they put you on immuno suppressants - i.e. - presdnisone ( can't spell it) and then azathioprine and then wean you off it just when you start feeling better. I will ask him next time, but with brain fog I'm forgetting where my elbow is as opposed to my arse.

Spuds fuddled

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AyrshireK profile image
AyrshireK

They generally put you on a steroid first like pred to reduce the inflammation in your liver - as this gets reduced they generally phase in and gradually increase a dosage of immune suppressants to keep your immune system in check & then they try to wean you off the steroid - prolonged steroid use isn't good for you as it has the effect of thinning bones and there is a risk of steroid induced diabetes etc..

Some base level of immune suppressant is then normally maintained to keep your immune system suppressed to prevent further flares and liver damage. Blood levels should be closely monitored to ensuring this is all working.

Some people do seem to get medical remission and doctors might start talking about reducing the immune suppressants (normally only after another biopsy) but quite often the lack of medication doens't last long before another relapse. It is unusual for you to get completely weaned off the actual immune suppressant (the aza) & I would think you definitely don't want that to happen without very recent blood results and a biopsy. Untreated AIH can lead to cirrhosis (as my hubby discovered).

The AIH group page on Facebook is great for supporting you with these AIH specific questions.

Katie x

Bolly profile image
Bolly

The AIH Facebook group Katie mentions has been given talks by hepatologists specialising in AIH. They say that without treatment patients do very badly, ie a high proportion die within 5 years so treatment is necessary.

Initial treatment is with steroids, either prednisolone or Budesonide, a bit like a fire extinguisher putting 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 but if people cant tolerate that other drugs are available such as mercaptopurine or MMF. Treatment must be tailored to suit the individual and most people need to be on a maintenance dose of Aza or similar long term, most likely for life.

A protocol that works for many is to start on 20-30mg of prednisolone or 9mg of Budesonide, add in Aza about 4 weeks later so long as the patient is responding well to the steroids and the ALT and Bilirubin have come down to acceptable levels. Depending on response steroids are then tapered down to 10mg a day and if everything is normal at 6 months prednisolone is reduced again. Patients should stay on steroids for 12-18 months and then withdraw slowly. Patients should stay on Aza for at least 5 years before looking at the possibility of withdrawal but overall there is an 80% failure rate and if the patient has cirrhosis withdrawal of meds should not be attempted at all.

The most common failure of treatment of AIH is non compliance with prescribed medication.

Hope this helps

White-feather profile image
White-feather

Hey Fuddled!

Don't worry about your spelling, it comes with having liver disease. I'm getting worse! Theatres no way that I could spell that either! 🌻

@Jules45 highlighted my spelling errors. I'm sure she would be so kind as to help you. She was helpful to me to the point of her giving me her email. So there are people out there who are willing to help. From spelling and guidance to honesty and support.

Just a suggestion. Hope it helps.

Oh by the way! My husband was fine with that post you mentioned. He could see that it was referring to previous post. Anyway that's in the past now.

Take care. Good to hear from you. 😀

There are two elements to the AIH- the inflammation and the overactive immune system. Just as mentioned by the above posters. However, this is only something I learned (after being diagnosed 8 years ago) recently at the meeting I attended organised by the Facebook AIH group.

The steroids deal with the inflammation and the aza deals with the immune system. If your ALT levels go over a certain value (it seems to vary slightly for each consultant), then the steroids will be re-introduced. This will be referred to as a flare or relapse. To check for inflammation, they will also monitor something called your IgG levels. Again something I only learned recently.

You are most likely to remain on a maintenance dose of aza (if you tolerate it) for the rest of your life, although I was told this would be initially 2 years, then 5 years, then forever!

Prednisone is the name of the steroid and it is converted into prednisolone by the liver.

Hope this all helps. Good luck with the meds etc. :)

smc555 profile image
smc555

Aren't there pretty severe side effects of taking Prednisone or Azathioprine for such long periods of time? Especially the Azathioprine that evidently must be taken for life. How many success stories have there been of persons who have used healthy diet, acupuncture, homeopathics, colon cleansing, Raieki and herbal remedies to get their immune systems functioning appropriately again?

AyrshireK profile image
AyrshireK in reply to smc555

Prednisolone certainly has some serious side effects when taken for a long time but sadly it and other steroids are the most effective and scientifically proven method of reducing the lver inflammation from AIH. It's why they do try to phase the steroids down as soon as inflammation is under control.

I have no experience of long term immune suppressant use because my hubbies AIH is 'burn't out' and they haven't moved him on from pred to an immune suppressant.

Whilst there well might be 'stories' of people going the alternative therapy route this in not quantified or proven scienfifically in the way that the tried and tested medical route is & it is a rather big gamble with your life and long term liver health to try out something in the hope it will work better than the medically proven route.

There are many AIH patients living nearly normal lives with their condition medically controlled.

in reply to smc555

Dear smc555

Many thanks for joining Health Unlocked and taking part in the forum.

Autoimmune Hepatitis is a condition that needs careful long term management and treatment. We have information on our website here: britishlivertrust.org.uk/li...

We do not recommend the use of homeopathic or herbal remedies for those with severe liver problems as these have to be processed by the liver and can actually damage the liver and make you more severely ill. More research needs to be done on the use of such therapies.

If you have concerns about any prescribed medication or are considering using alternative remedies then do please discuss this with your doctor.

Also, if you are within travelling distance of Birmingham, there is an AIH support group coming up at the Queen Elizabeth Hospital Birmingham (see healthunlocked.com/britishl... ) which might be of interest to you.

Best wishes

Carol

mc674 profile image
mc674

auto immune hepatitis means that you immune system is mistaking your liver for a foreign body for example a virus, so the immuno suppressants would me prescribed to try and supress the immune system so that it doesn't keep attacking your liver and gives it chance to recover then they would take you off them for a while because whilst your immune system is supressed it is unable to fight off infections which would mean something you would normally be able to fight off like a common cold becomes dangerous and can lead to pneumonia

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