Introduce myself HI!

My Doctor believes I have autoimmune Hepatitis caused by an autoimmune thyroid disease.  I see a Hepatologist at the end of the month for further testing.

This is all new to me and I'm not sure what I'm in for. In advice?

My worse symptom is fatigue, at times almost unbearable. I think people think I'm just getting depressed and being anti-social. They don't get it and honestly I don't explain it very well. Especially  when I can function pretty well in the mornings.  I even attend an early morning bootcamp class but by the afternoon I have a fever and feel like I can't move. What is going on?

Thanks Connie.
I've been reading up on it and have already decided there is no way I'm going on Prednisone, if they suggest that. I just started Tumeric and hopefully that will help.

Hi Chiccam,

Welcome.  Sorry to hear you are acquiring more AI diseases...that is the norm though.  Once you have one, the door opens to others

Unfortunately, Connie is correct.  The first line of treatment for AIH is prednisone.  More doctors are starting to consider and prescribe Entocort (budesonide) instead of pred.  It's also a steroid but has far less side effects so maybe that's something to know to have in your back pocket for when you see the hepatologist.

What are you taking turmeric for?  One of the first things the hepatologist will tell you is to stop taking any herbal remedies.  They are not controlled and their benefits are not known in diseased patients.  Sure, they may have some benefit to "normal" folks but once you have a problem with your liver, it's nothing you should play with without your hepatologist being fully aware of what you're taking.  The liver is the body's filter.

Be sure to stop any alcohol consumption and be very careful when taking any OTC pain meds.  The hepatologist should discuss the what not to do's with you.  Continue exercising when you can as that really helps.

I've been off pred since Dec '08.  I'm only on Imuran (azathioprine) for my AIH.  I also take Ursodiol.  That was started in an attempt to treat a possible side effect of the aza and it worked so I stayed on it.

I live a completely normal life.  I get a little sleepy in the evenings but I attribute most of that to my busy life...I'm sure it's worse these days due to the meds/disease but it isn't there enough to stop me from doing anything...but if I'm chilling on the sofa, I will have small naps in the evening where I never used to before.

Please look at my other posts and ask anything that's on your mind!

Hi there

You asked what you were in for. The most common course is that the medication brings the condition quickly under control, although it can take some time to find the right med or meds for you as an individual with some ups and downs along the way. Then you need to build back your reserves which can take a few months. After that you are probably looking at long term maintenance medication - sometimes for life but in some people the inflammation dies down sufficiently to be OK off medication (but to be honest I don't know that many who have been well off meds for any length of time - but some do this). Unlike many other liver diseases AIH is controllable. The liver damage can reverse in many people but even if there is permanent damage with AIH any further progression can be stopped in its tracks - or slowed down so much that it doesn't impact on the individual. Some people find the tiredness or at least some tiredness remains - frustratingly the doctors don't know why this happens to some people with AIH. Others soon settle down and just get on with life.

Yes the medication has side effects and in many ways the hardest part is finding the right med or meds and in what dose that balances the risks/benefits for you as an individual.

There is some consensus in the medical profession about treating AIH but when it comes to med regimes, starting doses etc my experience is that it varies considerably from doctor to doctor which can be frustrating to us patients! My hep describes treating AIH as 'an art based on science' which I think sums it up. My best advice is to build a relationship with your hep as you are going to need to understand each other over the coming months. I also find that different patients receive different advice concerning what other meds they can take etc.

I can understand your reluctance to take pred - Dany outlined budesonide which does seem to have far fewer side effects - certainly I found it much better than pred. But the advantage of steroids is that they damp down the inflammation very quickly, normalise the LFTs and stop the damage getting worse. Other meds which are usually introduced such as azathioprine take much longer to work and work in a slightly different way - they are less good at damping down the initial inflammation. In the long term some docs prefer to keep people on low dose steroids such as pred plus a low dose of azathioprine whilst others prefer no pred and a slightly higher dose of azathioprine. Both approaches are valid but this is where the tailoring to the individual comes in. I confess I do not know what the outcome is if people don't take steroids to damp that initial inflammation down.

I know at least one person taking turmeric for AIH - I think it has anti inflammatory effects doesn't it? But she is also taking azathioprine and had her heps OK (I won't say he approved it rather he thought it would do her neither any good nor any harm). But any decision needs to be based on your individual circumstances.

I too live a pretty normal life with AIH - actually a very normal life! I don't get the tiredness - just a few niggling side effects from the meds (I couldn't take azathioprine so I am maintained on a drug called mycophenolate - brand name CellCept) but I have found ways to control them.

Ann

There is no causal link whatsoever between AIH and alcohol.

I also think that when your doc said that your thyroid disease caused AIH that was shorthand for saying that if you have one autoimmune disease like thyroid disease then there is an increased risk of you getting another. I don't think there is any specific cause and effect. At least thats my understanding. There are loads of different autoimmune diseases and it seems to be luck which one(s) you get.

Ann

Chiccam,

I was diagnosed with AIH about ten years after I got my first autoimmune disease - Sjogren's syndrome.

When I got sick from the AIH I was put on prednisone and Imuran. Frankly, the prednisone was tolerable. It made me gain weight, and it also made me a bit crazy, but I started Paxil for the crazies and it helped a great deal.

My point is that it it possible that you might be able to tolerate the side effects of prednisone if they are not too bad, and then over time, perhaps the dose can be lowered to a point that you are not bothered by the side effects.

I was on pred for three years. I made it through. You too might be able to take that nasty drug.

Susan

"I only took one dose of Turmeric, I don't see what harm it will do as my husband uses it regularly in his cooking"

Your husband doesn't have liver disease, does he? That's the difference. If it turns out that your liver is fine, then have at it with the turmeric. Lots of things that would be just fine for a normal, healthy person aren't okay for those with liver disease.

I've never heard of ALT being raised by exercise. I know that Dany, my co-moderator with AIH, does runs for charity. She has her AIH under control. So your first step is to get properly diagnosed. If you do have an autoimmune liver disease, you then can take meds to stabilize you. Once that's accomplished, you should be able to exercise freely.

For what it's worth, I've never had liver pain, even though I had cirrhosis and liver cancer twice. Liver pain is rare. If there is pain in that area, it's more likely to be due to gall stones, distention of the liver, or abdominal bloating due to ascites.

Hugs,
Connie

If you have any type of liver disease, ibuprofen is a no-no. It's also bad for the kidneys.

Hugs,
Connie