Autoimmune Hepatitis

[Amy121]

I was diagnosed in April 2018, was put on high dose Prednisone which sent my blood sugar levels to 30 and gave me depression amongst other severe side effects. I was told I will need to add Azarhiaprine to my regime but was scarred off it after reading the leaflet given to my by the doctor. I have now come off all medications against doctor’s advice. I feel my only choice would be to look for Lternatives. Any one had Ny success with alternatives ?

[Hidden]

Hi Amy121

We have a useful publication on Autoimmune hepatitis you may want to read;

britishlivertrust.org.uk/li...

Could you maybe consider requesting another appointment with your doctor to discuss your concerns about medications? They may be able to offer alternatives and reassure you.

It is important that you are monitored and keep them informed of what you are doing so your condition does not get worse.

Also please only get medications from your own doctors who know you, have access to your full medical history and are able to safely prescribe.

Take care

Warm wishes

Trust1

[Hidden]

Hi Amy122,

I also have AIH and felt the same about the meds. The steroids gave me bad anxiety and was taking panic attacks. However it isnt all bad,as the inflammation went down and the dose was reduced the affects became less. I no longer take them but do take azathioprine. As scary as it is when reading the leaflet the affects are not always bad for everyone and usually settle. Stopping your meds can do you more harm and cause you more ailments than taking them ..

Maybe make another appointment with your doctor to discuss your thoughts and apprehensions.

I hope you get it all sorted and you feel better soon.

Take care xx

[Hidden]

Hi Amy121, initally when you are diagnosed with a long-term illness, it can be very scary and the side effects of the meds can be offputting. However, I have taken aza for almost 10 years and not suffered any of the side effects mentioned in the leaflet to the best of my knowledge. There are however alternative medications that you can take and it is worth discussing these with the gastro/hep that you are seeing. Some of them may be unsuitable depending on the level of progress with the AIH so far. Usually they put you on pred and then as they taper this down they add in the aza, until you are only on aza, although some people do need a maintenance dose of pred. (Usually around 5/10mg)

If you join the Facebook AIH support group, you will be able to see the alternative medical protocols that are used, but a pred and aza combo is the usual starting point. It is rare that people can come off medication altogether and have a good outlook, so it is best if you get all the information that you need before making decisions that could affect you unfavourably in the long-term.

Which particular side effects are you worried about? I may be able to put your mind at rest, although everyone does react differently to the meds.

This is the link aihsupport.org.uk/ Even if you don't really do Facebook, the meeting notes and advice in the Files are very useful and I would recommend going to the twice yearly meetings as you will be able to hear from the leading Consultants in the country on this issue, regarding the condition and current research in this area too.

I really wish you all the best and if you have any other questions please get back to me

I should have said, I have had AIH for about 10 years.

[AyrshireK]

Hi Amy, I would urge you to join the Facebook AIH support group as others have mentioned. facebook.com/groups/AIHorgU... Almost 2000 members - all of whom have travelled the AIH journey from diagnosis to treatment and some with 20+ years life experience with the condition.

I would also encourage caution about going untreated or 'alternative' in your care. Sadly, my husband has cirrhosis due to AIH and as his was never identified before it caused damage it went untreated - first sign of liver ill health was almost dying from end stage liver symptoms.

Yes prednisolone and azathioprine can be a bit yucky to start, symptoms from Pred do go once you reduce your dosage and if you don't get on with azathioprine there are alternative immune suppressant medications that can be tried.

You need to engage with your doctors to get the medication to work for you. You don't want to go untreated and end up even more poorly than you are already. AIH which is still attacking your liver can lead to the eventually failure of your liver and possible need for transplant (post op meds will include both pred and an immunesuppressant going forward).

Best wishes,

Katie

[GrandmaDylan]

I was a well controlled type 2 diabetic until I had to take pred for an unrelated condition a few years ago. The pred caused my blood sugars to soar and I had to inject insulin. My hepatologist wants me to start pred and aza but as my lft's are near normal we've agreed to watch and wait. I'm having bloods taken every 4 weeks to monitor for inflammation. I will however start the medications when it becomes necessary. He warned me that the possible side effects of aza are scary but on the whole the good outweigh the bad. Personally I wouldn't take anything that the hepatologist doesn't recommend. My son bought me some CBD oil to help with the pain but I want to discuss it with the hepatologist before I try it.

Do you have cirrhosis? If not budesonide can be used instead of pred.

Good luck, Deb

[Hidden]

I feel the same way. Just eat well. Don’t drink. Take the meds get liver enzymes down. But don’t fry your liver. I did beautifully for 5 months no Aza or prednisone then my mom got sick with cancer. Stress off charts and here I am again liver enzymes high not as high as June 2017 (1500 and 1400) but I am back on it 20 prednisone and 50 Aza. I really thought I wasn’t going to do it again. But we can’t! We have to stop the inflammation and getting worse. I am praying I can get this stress under control. It’s been 3 months can’t get them down. Just started Aza 3 days ago and prednisone was started low 7.5 before 2 months but not falling too low it’s anywhere from 195 to 347 So upped to 20 prednisone. I have pains. I think mine was brought on by stress and infection and drugged induced in 2017. Long story short take the medication till you feel better. I am stage 2. You? What are you’re numbers. I get blood every week

[MisterX]

Amy,

The plan is to use the steroid to get the inflammation - and therefore damage to the liver under control and then reduce the steroid to a low level by adding Azathioprine which will take up the main burden of reducing the impact of the immune system on your liver.

It's an effective treatment and far far better than cirrhosis or decompensated cirrhosis will be. The steroid effects reduce as you reduce the dose. It's imperative you save your liver.

I strongly suggest you go back to your doctors to discuss. It's your only rational choice.

Also you should NEVER EVER stop steroids suddenly.

Best wishes.