Got more blood test results-more confused than ever.

[NotorDJP]

Hello everyone. I have been working towards, what I thought was a diagnosis of PBC, but not sure now. I got back my latest new bloodwork and not only am I AMA positive at 1:160, I am also ANA positive 1:640. My smooth muscle antibody was negative <20, my Alpha Antitrypsin pheotype is MM (not sure what that means either) (It says on the report that most people have this phenotype). From what I've read with an ANA that high, I may have Lupus?? Can you have lupus and PBC? Also I guess your ANA can be that high with arthritis too or sjrogens. My IGM anitbody was non reactive so, probably no hep. Has anyone seen tests like this???

[NotorDJP]

Also i read that high ana titer says shorter time to liver failure in pbc

[Hidden in reply to NotorDJP]

I'd actually take no notice of perhaps stating a high ANA titre is 'a shorter time to liver failure in PBC' as again I expect it depends what one has got with having them present and also what these antibodies are working at.

I gave up long since bothering much about even my blood work as I've now been diagnosed with PBC for jsut over 3yrs and having bloods for 4yrs now. I simply glance at my results each time, take a bit of a note, have a bit of a downer if they are not as good as previous ones but then pop them away and crack on with life.

I know I dont' want to be wasting any time in the doldrums with regards to having PBC. I'd rather live now and though it is not good having PBC that we are stuck with, the ONLY bonus if you can call it that that there is here is that we can live our lives better as we won't be taking life for granted as we never know what is ahead.

[Hidden]

Hello NotorDJP.

Out of interest when you are you next to see a consultant?

It is possible to develop other auto-immune conditions (lupus is one as is MS, arthritis is considered too and also Sjorgens but there are others too).

I am not sure if ANA can also mean that auto-immune hepatitis (AIH) could be present alongside PBC, you'd have to ask someone in the medical profession there but just noticed that you have mentioned 'probably no hep'.

It can be difficult jumping to conclusions really.

I know I had a few other antibody tests prior to diagnosis of PBC Dec 2010 (all I know I have) and I did have one Jan 2013 as I noticed from my blood results as I had to check what the abbreviation meant. ANA I had same time as PBC early Nov 2010 came back negative in my case, the AMA came back with what the consultant wrote on his letter to the GP 'a positively high titre of AMAs' that sealed my daignosis with abnormal LFTs and GGT along with itching.

I think the point to note as I have just thought is that all the antibodies are different so I expect reading between the lines it isn't exactly an odd thing for a pateint with PBC for eg to also have normal/abnormal reading if others were checked for.

[NotorDJP]

Thanks for responding Peridot. I have since read that its not unusual to have ANA titer with PBC as well. As far as there being a more serious disease progression, you are probably right. Its so variable that they can't say conclusively about this. I was just suprised that I didn't have any IGM or SMA in my system. I assume you can still have PBC without this, but most do have it. I am kind of concerned about Lupus as I have more symptoms of that than I do anything else. But I guess I will find out more later. I have an appointment on March 18th to let you know that answer.

[NotorDJP in reply to NotorDJP]

I did an online consult with a specialist and they said that ANA being high doesnt mean a worse disease progression or the AMA being high either for that matter. Just an FYI.

[witchiegirl]

I read something recently about overlap of PBC and lupus. it is rare though. But there are some good treatments for lupus now, and many of the symptoms, while not a cure as such, can be suppressed these days. Many people never develop major problems with vital organs with lupus, or with PBC for that matter. I have a friend who is doing well with lupus - fatigue is a problem and she ahs a few other symptoms but she is okay.

It's hard not knowing for sure what is wrong, quite frustrating to have uncertainty but speculation online can be quite worry-provoking too. I too have had doubts over my diagnosis - I had features of lupus in my blood initially, still have raised ANA I think. But I am much more sanguine these days, just living my life, albeit not exactly the one I'd have had if not ill, but it's a life nonetheless!!