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Posted 7/8/2012 6:29 PM (GMT 0)
My son was diagnosed with Primary Sclerosing Cholangitis about 6 months ago. He has seen 3 GI specialists and none can definitively say if he has PSC or not. We went to a new doctor and now he is thinking Autoimmune Hepatitis?! I am at the end of my rope with these doctors. The most recent doctor said that his ANA was elevated and that's why he's thinking AIH. What is the normal criteria for diagnosing AIH? Any help would be greatly appreciated!
Posted 7/8/2012 6:48 PM (GMT 0)
Hello, herbgarden, and welcome to the forum. I'm sorry your son is ill. How old is he? My co-moderator, Dany, has AIH and is very knowledgeable about autoimmune diseases. I will alert her to your post.

Meanwhile, I suggest that your son be seen by a hepatologist. GI docs do not always know much about liver disease. Also, use the search feature above to enter AIH or PSC, which will bring up previous posts about these diseases.

I see that you've been posting on the UC forum. Is this what you originally thought was your son's problem?

Hugs,
Connie
Posted 7/8/2012 6:59 PM (GMT 0)
Hi Connie, my son has UC in addition to his liver issue. He has been seen by a hepatologist and he wasn't 100% sure about the PSC but based on liver biopsy results, and elevated labs he felt the most likely diagnosis is PSC.
Posted 7/8/2012 7:57 PM (GMT 0)
Thanks for the info, SG.

Hugs,
Connie
Posted 7/9/2012 12:52 AM (GMT 0)
Hello HG,

There's a scoring system they use with AIH. However, the biopsy is the definitive diagnosis. The different autoimmune liver diseases have different cellular changes. It is possible to have an overlap of AIH and PSC. Have they run the other antibody blood tests? For AIH, they check ASMA and LKM-1. For PSC, they check pANCA. For PBC, they check AMA. I would request they run all of those. Sometimes the antibody tests are negative though shakehead
Posted 7/11/2012 12:24 AM (GMT 0)
Hi Dany,
I know they checked the ANA and AMA but I am not sure about the other ones. I will check with his liver dr on that. The liver biopsy was "suggestive but not diagnostic of early PSC". I believe the idea of AIH was tossed around but after a 3 week course of steroids the LFT'S didn't completely normalize, so they threw out the AIH diagnosis. Also his Alkaline Phosphatate had been high, so the most likely diagnosis was PSC. This new doctor says its AIH....sooo frustrating!! I'm just concerned that if it is AIH, then maybe he should have been put on steroids. Is that the normal treatment for AIH? Then again if it was AIH would his LFT's normalize after 2 weeks on Urso?
Posted 7/11/2012 12:32 AM (GMT 0)
I know that Prednisone is the first line of treatment for AIH. You kind of contradict yourself. You say that he was on steroids for 3 weeks, then ask if he shouldn't have been put on steroids. Do you mean should he have been continued on them? If it wasn't normalizing the LFTs, I imagine that's why it was stopped.

Hugs,
Connie
Posted 7/11/2012 12:48 AM (GMT 0)
Connie, I meant to say "should he have stayed on the steroids longer". Sorry, my mind is running faster than I can type these days.
Posted 7/11/2012 1:34 AM (GMT 0)
Thanks for clearing that up. Since they didn't have a definitive diagnosis and based on the steroid's inability to bring his levels down to normal, they took him off.

Hugs,
Connie
Posted 7/11/2012 2:17 PM (GMT 0)
Herbgarden,

I am 25 years old. I was first diagnosed with AIH when I was 13, but then it was changed to PSC when I was 14. AIH and PSC are similar and can overlap. I have a book that states this also. I was too young to remember exactly why my diagnosis was changed, something to do with the bilrary tree. I can say from my experience that having a different diagnosis didn't change anything with my treatment, I still feel the same, and nothing really changed. When I first was diagnoses with AIH I was put on Prednisone and Imuran to treat. I have taken Imuran since then, I also have UC, diagnosed when I was 14.

I understand how you want to know what exactly your son has. My mom used to always want to know as much as she could and posted on boards.

How is your son doing? Does he feel well or does he feel sick? How old was your son when he was diagnosed with UC?

A.
Posted 7/11/2012 3:42 PM (GMT 0)
It all sounds a bit confusing.  So they ran AMA which is specific for PBC.  Do you have the results for that?

After 3 weeks of steroids it is possible that his LFTs hadn't normalised yet but were they dropping?  What dose of steroid was he given?  Is he on an immunosuppressant for his UC?

Was he given Urso?  That is standard treatment for PBC.

When is he seeing the new hepatologist?

Sorry for all the questions, just trying to help you sort it out smilewinkgrin

Posted 7/12/2012 12:40 AM (GMT 0)
Dany,
It is very confusing indeed. Yes, they ran the AMA test but I don't have those results. I was told that it was positive at a very low titer, so therefore they disregarded it. Looking back over his blood work his LFT's were dropping after being on the 40 mg prednisone. He was on the prednisone for 3 or 4 weeks total. He started at 40 mg and began tapering down. He has only been on Asacol and currently Lialda for his UC. (neither seem to help with that.) We just started Low Dose Naltrexone to try and get the UC under control. Yes, he was put on Urso and within 2 weeks all of his LFT's were in the normal range. There are so many variants of AIH, PSC and PBC and so many overlapping symptoms. Fortunately my son doesn't have any symptoms at this time and really never did. It was by accident that we discovered his Liver issue. He went in for a gallbladder removal and the surgeon did a biopsy and then that's when all the speculation started. Funny thing is that we don't know any more than we did 8 months ago. His liver is functioning perfectly, but it would help to know exactly what we may be facing in the future. Since he is no longer on Prednisone or any kind of immunosuppressants, would his LFT's get better if he had AIH? I know that Urso can bring the numbers down rather quickly in PSC and PBC, but how about AIH? , and What are some specific tests that I should request? Thanks so much for all of the information!
Posted 7/12/2012 12:50 AM (GMT 0)
Girly girl,
Thanks for the information. My son is doing very well overall other than the UC that's flaring up right now. I see it has been about 11 years since your diagnosis, so how are you feeling? Is your PSC stable or has it progressed at all? Have you had any complications from it like cholangitis attacks or blockages in your bile ducts? Some people never have any problems and then others are symptomatic at diagnosis and have lots of problems.
Posted 7/12/2012 1:52 AM (GMT 0)
What is UC?
Posted 7/12/2012 1:53 AM (GMT 0)
Ulcerative Colitis
Posted 7/12/2012 10:18 PM (GMT 0)
HG,

If he had a slightly elevated AMA and the Urso helped his LFTs decrease, I'd lean towards PBC...and maybe since his ANA are positive...maybe it's a PBC with AIH overlap or AIH with PBC overlap...since you said that the short time he was on pred his numbers lowered too.  I'd ask the new doc to rerun the AMA, ANA and anti SMA...as well as recheck his LFTs.  It doesn't make sense that he was showing improved numbers on the pred but was weaned so quickly.  Granted, I was terribly ill when I started pred but I started at 40mg and CellCept was added a week later...I stayed on 40mg for 5 weeks before we started decreasing dose.  I was on pred for a total of 22 months. 

The new doc he'll be seeing is a hepatologist or a GI doc?

My understanding is that a lot of UC patients are also on azathioprine or 6-MP...so you should ask the new doc about that too.  It would appear that being on that may help all his issues :-)

Maybe also speak to the new doc about re-reviewing his biopsy results.

Posted 7/13/2012 6:03 AM (GMT 0)
Like Dany I am surprised they took him off the pred so quickly if the LFTs were dropping. I thought that it was the trend that was important but the speed of the drop varies from individual to individual. Mine drop really quickly on steroids - during my last flare the ALTs dropped 200 in just 24 hours but then of course the speed of decline slowed so it took about 4 weeks for them to return to normal.

The other immunosuppressants like CellCept or azathioprine work in a different way so take about 6 weeks to start working.

But then as you say its weird that the LFTs haven't gone up once the steroids stopped if it is AIH. The head hep at the liver unit I attend is really into these overlap syndromes. He thinks its likely that lots of people have elements of several different autoimmune diseases and so he will try lots of different combinations of meds without worrying too much about giving a specific label. So a friend of mine with AIH and elements of PSC is treated with urso as well as azathioprine as he thinks that will improve the bile duct side of things.

Ann
Posted 7/13/2012 9:08 PM (GMT 0)
Ann,
It is weird that the LfT's have remained normal without being on Prednisone, if it is AIH. Does one normally have to stay on Prednisone or immunosuppressants if the have AIH, in order to keep the LFT's in the normal range? I agree with your doctor about people having different elements and overlapping diseases. I honestly think that's what were dealing with here. My son currently takes just URSO for his liver. All of his other levels are normal too, such as: Albumin, INR, bilirubin,

Dany,
When I asked his GI (who works closely with the Hepatology Dept where my son is seen) about the Prednisone, he told me that his numbers didn't drop as quickly as they should have, so they through out the AIH diagnosis. I looked back through his lab work and the numbers were slowly but surely declining every time he had his blood drawn. There were times after he was off of prednisone that he was seen for UC issues and I noticed that the LFT's were shooting back up again along with the Alkaline Phosphatate. He's been on Urso for about 6 weeks now and everything is perfectly normal.
Posted 7/14/2012 3:13 AM (GMT 0)
HG,

When is he seeing the new doctor?  It is possible that if he does have AIH, that it's mild.  Some, very few, folks can have very mild AIH and don't stay on treatment but remain under observation.  When/if the levels start to climb and don't come down on their own, they are put on pred.  The relapse/flare incidence for people who are treated and fully wean off medication is 75%.  That's why most people are maintained indefinitely on something.  They generally try to wean off all prednisone while also on an immunosupressant and then maintain on the immunosuppressant. 

So maybe it's an overlap and the Urso is helping the other (either PSC or PBC) and the AIH is mild and staying under control.  In any case, the new doc should definitely review his biopsy or have another pathologist review the biopsy as there are specific cellular changes for all the diseases and that's why the biopsy is the definitive diagnotic test.

As Ann said, everyone responds differently.  However, his LFTs are normal now so that's great!

Posted 7/15/2012 12:16 PM (GMT 0)
As Dany says most people with AIH are on treatment long term. If a biopsy shows no inflammation at all after several years treatment then some docs will try weaning you off meds - but the relapse rate is still high (as ever they argue about the precise figures!).

But even if you are OK off meds (and I did 2 years off meds at one point after one year of treatment - albeit with no biopsy to check for ongoing inflammation) you would normally be on treatment longer than your son - I would expect several months of treatment being needed to damp the inflammation down. Urso is a very safe drug with few side effects - which is why my hep is happy to try it on several patients even if he isn't absolutely convinced of a specific diagnosis.

But your son's results are good - and that is the important thing!

Ann
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