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Autoimmune Hepatitis - Prednisone questions

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Posted 3/30/2014 10:55 PM (GMT 0)
My son is tentatively diagnosed with autoimmune hepatits and started on 40mg of Prednisone daily this week. He is having an issue with heartburn and reflux already. Aside from that issue can you give us any advise on what we can expect? How long does it take for the prednisone to start making him feel better? He started feeling sick in December and has had no energy, nausea, other digestive issues and elevated liver enzymes. They weren't as high as I've seen other people have here but they kept going up.

We're thinking of seeing a naturapathic doctor or acupuncturist to see if there is a better, more healthy way to help him, has anyone tried this?
Posted 3/31/2014 12:28 AM (GMT 0)
hi namian, welcome! we have a number of aih patients here. i have liver disease and ms(auto immune). prednisone is also my go to med when i have symptoms. one of our mods is aih and will get to you shortly.
best to you barry
Posted 3/31/2014 12:58 AM (GMT 0)
We have a few members on here with AIH. I believe that for many prednisone is used for major flares and to get things under control. Once under control an immunosuppressant can be used which is easier on the body.

Mamma (Carol) will usually email one of the board moderators that has AIH. So keep an eye here as you should get a response.
Posted 3/31/2014 8:45 AM (GMT 0)
Hi there

I have had AIH for nearly 15 years now. Once I found the right medication to control it I have been well and apart from a minor bump or two have been fine. So hang on in there. Most people with AIH do very well. But that first few months can be a bit frightening.

Prednisone can be hard on the body - but it really works to quickly bring the inflammation down quickly and so prevent further damage. My guess is he will start to feel better very soon. And of course the side effects are much more bearable when you can see the med is working!

The list of side effects can be frightening but almost everyone at that sort of dose will get things like the swollen cheeks and often a hump/bump on the back of the neck. Plus acne is very common. Best be prepared for all that I'm afraid. Things will get better at lower doses. The other major issue is weight gain. Some people don't get it - most do - and it can happen quickly. So having some healthy snacks around may be a good idea. Has he been given something for the heartburn? Giving the pred with a meal may help reduce that by the way.

There is another steroid available called budesonide which has a much better side effect profile. But it isn't licensed for children (here in UK at least) so depending on your son's age that may not be a possibility. But if he is a bit older then do ask your doc about the possibility of that.

Once his readings are coming down nicely they will probably introduce an immunosuppressant like azathioprine. This takes a bit of time to work but then allows the steroid to be much reduced/withdrawn. I have seen different figures for how many people are able to come off pred completely. My sense is that about half of people need low dose pred/budesonide long term as well as the immunosuppressant. But like many things connected to AIH you can find different figures everywhere!

I am not aware of any 'natural' things working. I did look into this early on in my diagnosis. To be honest I found some scary people out there making amazing claims so do be careful. Do not take anything without checking with your hep. I did find one acupuncturist prepared to treat me whilst I took steroids (most demanded I stop taking the medication which I refused to do) so I did give that a go. It did absolutely nothing for me I confess.

Ann
Posted 4/1/2014 2:12 PM (GMT 0)
Hi Namian,

Welcome to the forum. As Ann said, there are many side effects to the pred to watch for. I had a whole lot of them. Coming from a science background, a naturopath won't be able to stop the inflammation as effectively. I would discuss any other treatments with his hepatologist. The doctor will be able to better explain the disease process to you and why modern medicine is most beneficial at this point. Maybe down the road it may help with some side effects. You don't want to postpone getting the inflammation under control.

As per heartburn, talk to his doctor about a proton pump inhibitor (PPI). The pred can be really hard on stomach lining. The PPI will decrease the amount of acid produced so it's better than just having an antacid. I was on one the entire time I was taking pred.

I'd say a couple of weeks and he may be flying around the house. Pred gave me more energy than I ever wanted. It also can cause insomnia. I was more normal but with extra weight when I got to 10mg...roughly 3-4 months after I started.
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