Pbc with possible AIH overlap

[tnchikadee]

Can someone tell me why my doctor thinks I also have AIH with my PBC when my ANA is negative?

[HealthyChik]

I couldn't begin to answer your question, but I was suspected of having it as well when I was first diagnosed. Although I was ANA positive, from my understanding, there are other antibodies (AMA, IgG, anti smooth muscle antibodies-ASMA..just to name a few) that can also indicate or cause suspicion of AIH, but a biopsy would confirm it. It seems to be a bit more complicated to diagnose. For now, docs have basically ruled it out for me, but I haven't had a biopsy. Definitely ask tons of questions at your next appointment. Your doc should be able to explain why he's checking for AIH. Good luck and keep us updated😊

[tnchikadee in reply to HealthyChik]

Thank you. My Smooth muscle were high but that can be with PBC as well as igm high again could be PBC. My igg was negative as well as my ana. So this is all so confusing and stressful.

[HealthyChik in reply to tnchikadee]

I completely understand. I was so stressed out for a while and I still wonder if I have it...ugh. My ASMA was negative but positive for some IgGs and ANA. I had a series of tests done by a rheumatologist and it was mind blowing.. literally hundreds of antibodies were tested. AI diseases can get so complicated. I was positive for several things but not enough to confirm a diagnosis for any overlap at this point. I was told to just watch for any new symptoms...which wasn't really reassuring, but I suppose it's good that they didn't find anything. Good luck to you and I hope you get good news

[tnchikadee in reply to HealthyChik]

Thanks so much. Was your igm positive as well ?

[HealthyChik in reply to tnchikadee]

I was negative for all of the specific ones I was tested for, except Rheumatoid Factor (IgM) which indicates a likelihood of rheumatoid arthritis which I don’t have at this point. It also can be positive with “Other Autoimmune conditions”..so who knows what it really means. I’ve never seen just an overall test for IGMs in my records.

[Jennyhadenough in reply to tnchikadee]

Is your ALT liver enzyme in range

[4pjx__]

Depending on your LFT's, you may have elements of AIH. This is what happened to me. I am not treated for AIH but according to the biopsy I do have elements of it. I also was ANA negative. I started the Ursodiol and all my LFT's came down a lot. The AST and ALT came right down and I think those are the ones responsible of AIH. Although, I am no doctor. I think if they had not come to normal range they would then have also treated me for AIH.

Pam

[tnchikadee in reply to 4pjx__]

Thank you. My last blood draw before I started Urso, which was only 3 weeks ago, my ast and alt came down on their own. Alt was 108 last draw 70 and ast was 97 last draw 69 . Of course they seem to go up and down all the time it seems.

[HealthyChik in reply to 4pjx__]

I agree with 4pjx. After my doc mentioned AIH, he said well just watch your ALT and then make a decision on a biopsy. So I think that is partly how they diagnose. Mine also went down to normal and it hasn’t been mentioned again. Hoping your doctor can ease your mind. When do you go back for a follow up?

[tnchikadee in reply to HealthyChik]

Thank you all so much

[janine541]

Hi I have PBC and had a biopsy 3 year ago that showed traces of AIH

The doctor didn’t test as it was looked into and because my bloods weren’t showing signs they decided their was not enough evidence

Now my ATL went up to 290 and is up and down all the time it is a open to see wether to do another biopsy

Hope you get your answers

[ninjagirlwebb]

The below from the pbcers.org site might answer some of your questions.

pbcers.org/definitely-pbc/

Primary Biliary Cholangitis and Autoimmune Hepatitis (AIH) -the “Overlap Syndrome” PBC overlaps with autoimmune hepatitis (AIH) approximately 8- 12 percent of the time. These people have the clinical features of AIH, such as very elevated transaminases and the autoantibodies of AIH ñ antinuclear antibody (ANA) and/or smooth muscle antibody (SMA). However, they also have the presence of antimitochondrial antibody (AMA) in their blood, which is diagnostic of PBC. It has been suggested by some experts that those people who test positive for AMA should not be considered to have AIH. This is because there is such a strong association of AMA with PBC. In fact, it has been demonstrated that features of AIH in people with PBC may be transient. Furthermore, response to UDCA appears to be similar in people with PBC with and without features of AIH.

It is important to always test people with the AIH/PBC overlap syndrome for the autoantibody- liver kidney microsomal antibody (anti-LKM). If anti-LKM is positive, the diagnosis of AIH is more likely. There is also a small group of people who are found to have AMA in their blood and who genuinely have AIH. These individuals have very elevated transaminase levels with minimal elevation of alkaline phosphatase levels. AMA titers typically are low – less than 1:160 in most cases. These people typically respond well to conventional treatment for AIH.

[Biddyb]

Make sure the consultant is positive if you do have the overlap before you take the next step. My guy presumed I had the overlap and put me on Steroids which led to lots of kind term damage then immunosuppressants which made me really ill. I changed consultants and first thing he weaved me off Steroids also he is 85 % sure I don’t have the overlap. Get regular bloods done, but now my ALT is rising which is worrying. Worst thing is worry, hardest is thing not worrying. Good luck ask questions and be strong