Newly diagnosed AIH. But side effects using Uceris for only 4 days

Hi Sybil,

Welcome to the forum. I started my journey on pred. I've heard from my hepatologist and many patients that more AIHers are being started on budesonide (the drug name for Uceris) as it has less side effects. I don't know if budesonide affects the stomach lining as pred does but in case it does, I'd speak to your doctor about using a proton pump inhibitor like Prevacid.
You should definitely let your doctor know of your side effects. Are you seeing a hepatologist? That said, steroids do make you whacky but I was under the impression that it was less so on budesonide, however, probably still possible :(

Also, has your doctor discussed starting an immunosuppressant? They are considered steroid-sparing meds so they'll help you wean off the steroids and will be your longterm drug (if your doc keeps you on meds longterm). Most patients are as there is a high relapse rate for AIH.

I hope that helps for beginners:)
I'm sure others will contribute soon enough. Please continue to ask questions and try to be optimistic. I have been very lucky and have responded well to meds and have tolerated them thus far.

Sybil,

I'm assuming you had a biopsy? What type of damage do you have, if you know and what are your LFT levels at? I'm also guessing you'll be having a new set of labs done soon? How often are you having blood work? Is your doctor a hepatologist or are you going through your primary care?

Hi Sharon

Can't add much to what Dany said. I have had AIH for 16 years now. Live a normal life, It is a shock at first but generally people with AIH do very well. But it takes a bit of time to get your head round it.

Undoubtedly the hardest thing is getting the balance of meds right. I think Uceris is budesonide right? (I am from UK and we tend to refer to meds by their generic name and have different brands so it can get confusing!). Most people do get on better with that than prednisolone/prednisone but no one med suits everyone from my experience. There are lots of meds for your hep to try.

Most people with AIH are fine once they find the right meds for them. Sometimes they develop cirrhosis but effective treatment can prevent any further damage. I know one person with AIH who was diagnosed 25 years ago with AIH and cirrhosis for example who works full time, has married and has 2 kids and just lives a normal life. Very few people with AIH need transplants (although some do). It is one of the few liver diseases that can be controlled well with medication.

Ann

Post Edited (AIHer) : 2/19/2015 11:57:42 AM (GMT-7)

Hi Ann,
Thanks so much for your comments. They are very encouraging.
I'm so new at this I'm not even sure what to focus on. Yes, Uceris is budesonide. My doctor seemed surprised that i had such a strong negative reaction but I was sick as a dog after just a few days and had to stop.
The idea of prednisone scares me b/c of the awful side effects.
One question - what criteria do docs look at to tell if one is getting better? For example, I believe the only indication that I was sick was high AST and ALT values. Plus I've been feeling terrible for 2 yrs. Should I be asking my doctor about other lab criteria? I haven't had a biopsy and am not interested if I can avoid it. My doc doesn't seem to think it is necessary right now.
Can a sonogram give any useful information about the condition of one's liver, or does it only show gross damage?
Any comments and thoughts are greatly appreciated.

Sharon/ Sybil

Yes get copies of your results. As well as liver function tests for AIH they do a lot of tests looking for antibodies. This shows something is amiss and could be linked to autoimmune problems. Some people with AIH test positive for an antibody called ANA, others for one called SMA. They are the two most commonly found in AIH. But not everyone tests positive for one of these! They are not a definitive test. Diagnosing AIH is like putting a jigsaw together with some pieces being positive results and some negative ones ruling out other things.

A sonogram is what I call an ultrasound I think (amazing the language differences between UK and US on medical things!). That can show whether liver is large or small, rough or smooth, whether there are any lumps etc and can sometimes see how the blood is flowing. But it can't see inflammation or patterns of inflammation. That is seen from a biopsy which is also the best way to assess the extent of damage.

Usually it is ALTs that show things are improving.

Are any other brands of budesonide available in the US? That may be worth a try as it may have been one of the fillers you reacted to rather than the med itself. One other thought - you did take it with food did you? I find that makes a difference with most meds and for some it's crucial for me. By the way the brand we get here is called Budenofalk but not sure they market it outside Europe.

Lots of websites with good information as the miz has said. Stick to the reliable ones and look across both US and UK ones. Sometimes for something unusual like AIH you need to look far and wide. So the American Liver Foundation, the British Liver Trust, Mayo etc are good places to start for reliable information. And there are links from there if you want more information/support. For understanding lab tests there is a site called labtests online that is good. There are of course a few websites advocating untried/untested/non evidence based 'cures' for AIH. So be warned!

But take it steadily - this AIH thing is more of a marathon than a sprint. So don't try and get your head round everything from the start!

Ann

Thanks you so much. I'm so happy I found this site, as I was really so upset and not sure where to go. Thank you to everyone for sharing your stories and advice.
Sybil

There aren't many people here with AIH so I suspect no one can answer your specific question.

It does sound to me like its possible the active ingredient has been absorbed too quickly - although I stress Im not a doctor! From looking on the Internet Uceris is an extended release tablet with a coating designed to pass through the stomach so it is then absorbed in the small intestine (slower absorption and into a part of the circulation that goes round the small intestine and liver not the rest of the body) not the stomach. For that reason the capsules mustn't be cut, broken or crushed I think. There are also some medications that could interfere with this - I am sure your doc checked you weren't on these - but may be worth you double checking. The other thing that can interfere with absorption is grapefruit juice which is why the instructions state not to take with that.

Cant think of anything else I confess.

Ann

Thanks very much for your email. I'm sorry that you also are having such hard medical problems to deal with.

As for Uceris, I know it is time-released, and I was on a low dose. I was surprised that my doc suggested that I take half a pill when I was ready to re-start, but I'm not yet ready and I'm a bit scared to go on it a again.

Yikes, this is tough to live with,but it is so helpful to have this support group.
Thanks so much.
Sybil

No, my stomach was so bad after I took the Uceris that I had to have an endoscopy, which found abrasions in my stomach. So now I need to have that heal before I can start again.

But I was only on 3 mg of Uceris and still had a terrible reaction. I think the usual dose is 9 mg.

Once my stomach is healed I will have to decide - either a 3 mg of Uceris, cut in half, or imuran.

Thanks.

Google prednisone and look at what it does. There's no question about whether it can help certain problems. On the other hand, like any med it can have bad side effects, particularly if used for long periods of time. I took it for a week, post transplant and was glad to stop afterwards. It dehydrated me and made me feel out of it. Other people have weight gain, acne and worse. If you really need it, that's fine, but there are usually better meds these days.

The standard initial treatment for AIH is a steroid (either prednisone or Budesonide) - this is because the steroid works to quickly damp down the inflammation and so stop the damage quickly. Then an immunosuppressant such as Imuran is added. This takes longer to work but has fewer side effects. Most people are able to then reduce the steroid to a low dose - many can come off the steroid completely but a good proportion need to be in both types of med long term but their pred is down to 5mg or so.

Initial pred doses can be high for AIH and ongoing treatment can be long term or for life. That is why the side effects can be hard as many of them depend on the cumulative dose you have taken.

Imuran on its own is a possibility - the only drawback is that it will take 6 or 8 weeks to work.

At the end of the day it is often a matter of weighing up the risks and benefits of all the options. Steroids can be hard to take but untreated AIH can result in serious liver damage or worse.
Ann

Hi hwarrior...your first time in Hep...I see you sometimes in Colitis forum. Welcome.

Do you have AIH too?

Our members have various types of liver disease, or are loved ones of those with liver disease.

How can we help YOU?

Hugs,

Mama Lama