BIOPSY QUESTION

[general1]

I had a biopsy done in December 2011 which radiologist stated was a form of hepatitis. I then had that same biopsy sent to Johns Hopkins and they stated because I have had a positive AMA that it is PBC but biopsy showed could be a form of hepatitis. My AMA was positive one time, negative 1 time and very very slight the 3rd time. So my question is what exactly do I have? I'm being treated for PBC (urso 3x's a day)...could I have an overlap. I just want to make sure I should not be being treated for autoimmune hep also. My Hep panels were negative and I was neg for ANA. My ALT & AST numbers are back within normal range but my alka phos is still in the 200's. Just curious what you guys think.

[Alley27]

Hi it is possible you mayhavean overlap but saying that....my liver biopsy is Positive for Autoimmune hepatitis and my blood says Positive for PBC..I would ask if it is possible to get a second opinion and ask if it is at all possible you may have an overlap with AIH, based on what the radiographer said.

They are treating mine as Autoimmune Hepatitis, even with the overlap which I think is wrong; if I have both I should be treated for both....at present I take 30mg prednisolone steroids per day and when I go back to see consultant I will also be taking azathioprine...an immunosuppressant to control the antibodies.

Hope this helps.

xxconniefused

[Tumbleweed41]

conniefused -

It is my understanding that the Azathioprine IS for the PBC and we will be taking it for the duration. I also have the Overlap. Do you know what your % is for the PBC? If you are at the "beginning" it may be why they aren't doing a whole lot about it. Hmmmm? -

General -

I believe that 150's is the range for Alk Phos. so while yours is elevated it isn't bad. My personal 'fix' for that is the Milk Thistle. -

Take care and stay positive. -

[kosy2 in reply to Tumbleweed41]

I thought URSO for PBC, Azathioprine for AIH.

[general1]

I was pretty much told it was PBC due to a positive AMA...but that was the first AMA test done. My GI Dr has me on a "working diagnosis". My ALT and AST were in the mid 100s but have dropped to normal range. Alka Phos was 384 but is 215 now. Ive been on Urso since April 2012. My GI Dr thought it could be AIH but after Johns Hopkins reviewed biopsy & bloodwork he said more on the lines of PBC. Personally I think its both. My PCP says PBC. I guess I'll just call my GI Dr and talk with him again. As for % of PBC I cant even get anyone to tell me what stage or anything. Both think its been caught at early stage as there is no fibrosis on biopsy.

[kosy2]

General,

How was biopsy done and how many samples? I had biopsy laparoscopically with 3 samples. 1 punch, 2 wedge - 2 from left side and other right side. Each sample showed different stage. I truly believe if a fourth sample had been taken..a fourth stage would have been found.

The liver is large the sample small. PBC does not destroy the liver evenly so biopsy is limited. On top of that you have the difference in the expertise of the doctor looking at the tissue sample. You might get another dx if biopsy were sent to Mayo Clinic.

In my opinon, the bottom line is the same - THERE IS NO CURE OR REAL TREATMENT FOR PBC. Only treatment for some of the symptoms, some of the time, for some of the people suffering PBC.

Just my 2 cents.

[EAJSWW]

Diagnosis of PBC is generally now decided on if you are AMA positive.

The person who read your biopsy however should be able to see what sort of other damage is apparent.

I know I was told that my biopsy showed changes consistent with AIH as well as PBC so they must have been able to tell?

There is presently NO cure for PBC, Urso is a bile acid which helps to 'lubricate' the bile to help stop back log which cuses damage within the bile ducts and liver.

I believe there is NO current and valuable research which states that Azathioprine which is an immunosuppresant helps in any long term way with PBC.. Azathiprine is defintely not a drug of choice for PBC in the UK, but I will check today when I speak with someone from the PBC Foundation to see if this has changed. also as for levels of alk phos, it depends on the testing done at any particular lab, and which values they are using. ONLY ou doctor will be able to tell you what drugs you should be on and what they are being used for. many of us are taking Azathioptine alongside Urso, but the Aza is being used for the AIH not PBC.

[KarenRL]

I also have AIH/PBC Overlap. But, I'm afraid my answer isn't going to help much because the ONLY thing that has been off in my blood work was that my ALT was slightly elevated. A biopsy, however, showed Stage 3 for both conditions. I am on Prednisone, Cellcept and Urso. My doctor indicated that it is rare to be so advanced in these diseases and to have blood work that looks like mine - but, it can happen. So, my advice would be to keep at it with your doctor (or a new doctor) until you are completely satisfied with your diagnosis.

[Jtxx]

I have AIH/PBC overlap syndrome. I am AMA negative but biopsy confirmed PBC (about 5% of patients have negative AMA PBC) and I am SMA positive for AIH but no mention in biopsy result, although my LFT's have had a positive reaction to steroids and autoimmune suppressants.......

I currently take:-

* Urso for the PBC (as far as I believe this is the only treatment for PBC)

* Azathioprine for AIH (just finished 6month course of steroids on 30.07.12 - Budenofalk)

I am feeling relatively well at the moment. Hope that means all looking good inside as well. I have not had bloods taken since finishing. Will get them taken next week and again 3 weeks after that and will see the consultant again next month to assess. Take care. x