im confused! specialist confused

[liverj]

hi h ave just been diagnosed with pbc have had a liver biopsy which showed no scarring,but as well as ama antibodies ive got ana antibodies which my doc said are really high so he going to get a second opinion off a liver specialist at newcastle hospital.anyone out there with the anti nuclear antibody?have been on urso for 8 days now have really bad itching fatigue not to bad and have got to have a bone density scan.why me........

[Tumbleweed41]

Hi! liverj -

The best thing to do - in my opinion, lol - is to research the ANA on the net. That is what I did. Wasn't really pleased but it did give me some answers. Mine at the time were 1:1200+ - Dr. said that the lab just quit counting at that point. Your Dr. may point you to a Rheumatologist - not a bad thing -

I have AIH with PBC overlap and I have been on Ursodiol for 4 years along with Azathioprine. I have not been "blessed" with the itching to this point but have my good days and bad days with the fatigue. I am in the process of checking for Lupus. -:(. If we wake up in the mornings, it's a good day. - Let us know how things go. Ok?

[Jtxx in reply to Tumbleweed41]

How milograms are you taking of Azathiorprine? x

[Tumbleweed41 in reply to Jtxx]

X - Sorry for not answering sooner - didn't see your question until now. I have been on 75mg of Azathioprine since day one, along with 900mg of Ursodiol.

[Jtxx in reply to Tumbleweed41]

Thanks for that. Was on 150mg of Aza but they had to reduce me a couple of weeks ago as my WBC went far too low. I am now on 100mg Aza and 1000mg of Urso. WBC wee bit better. Not got results of bloods taken last week but will phone tomorrow. Figure no news good news! X

[Tumbleweed41 in reply to Jtxx]

Be sure to let us know - yay or nay. -

[liverj]

morning been awake for 1 hour now with the itching.i also forgot to mention i have raynauds disease as well and have been to see the rheumatologist this is how i found out i had pbc through bloods he took who then sent me onto the liver specialist.

[tinapro]

My ANA Titer is 1:320 and a different ANA was 2.7 and the Rheumatologist told me that both the ANA test were very high and told me that comes with PBC.

I am being tested for Sjogren's, Lupus, and RA. Those test have come back negative but the Rheumatologist told me that she will continue to check every 3 months because it isn't un unusual for them to positive. My SED Rate is 41. (Also high)

Since I started taking Urso in August of 2011 the itching is so much better but haven't found anything that helps with the fatique. I also started taking plaquenil in December and have been feeling alittle better as the flares I was having that kept me in bed for 2-3 days at a time and would happen every couple of days now has been 1-2 days and happens about once a week. Plaquenil can take 6 months to get the full effect so we will see if it helps more.

I don't think anyone understands that fatique with PBC is 100 times worse then without PBC. I used to think I was tired but they way it is now there is no comparison.

Liverj, good luck to you! You mention that your liver biosy didn't show scarring, but were you diagnosed with PBC from the liver biopsy or because of the blood work? I ask because I was diagnosed by blood work and the liver biospy confirmed it and I only had minimal scarring and so was told I for sure had PBC and was a Stage 1 and the last visit after blood work was told Stage 1-2.

[zipitydoo]

From what I understand a positive ANA shows there is auto immune stuff going on. I have a positive AMA and ANA.

[donnathompson]

Hi this is all mind boggling to me was told by my gp i have PBC going to see i liver specialist next week,was referred to see a counselor which i have been speaking to for a few week now about how i feel.Be glad when i been to the hospital as im also very confused.xx

[Christine69]

I also have a positive ANA and AMA. I have know about the ANA for many years and my understanding is that it means you have some type of auto-immune issues that could later show up in many ways. I also have Raynauds disease which I have had since I was little if not always. My mom has a thyroid disease and my grandmother died of Lupus. I believe all of these diseases are connected.

[Tumbleweed41 in reply to Christine69]

Hi!

I, too, think they are all connected, which is why I had asked the question about Lupus. According to the Dr. that diagnosed my AIH/PBC, at least this part of the Auto Immunes is not inherited nor contagious. They don't understand it either. (joy!)

[cazzi]

I have just written about my experience with PBC and SLE in response to another question " does anybody else have Lupus". Rather than repeat myself I will leave it to anybody interested to access and read.

[Hidden]

I am ANA and AMA positive. My ANA is for anti centromere antibody as there are different subtypes for different types of connective tissue disease. I have limited Scleroderma which for me includes raynauds, GERD, calcinosis and talangactasia. I also have other problems associated with this. From what i understand there is a strong correlation with Scleroderma and PBC.

[Tumbleweed41 in reply to Hidden]

Hi!

You said "From what i understand there is a strong correlation with Scleroderma and PBC".

Thank you soooo much. I really needed that. - LOL

Stay strong - We are "special" people. -

[Jtxx]

We all have the same reaction when we are first diagnosed. It is a rare condition and there are no black and white answers either. It can get frustrating at times but you can still have a good quality of life if you just make adjustments. It's not all doom and gloom! Write down a list of questions to take with you and also join the PBC Foundation who are a great support and a great source of information. Good Luck and try to stay positive. x

[Tumbleweed41 in reply to Jtxx]

Right ON!!!

[NaeNae]

I have recently been diagnosed with pbc as well. I also had positive ANA and AMA, although I knew the ANA would be positive before the results came back because I also have thyroid disease, pernicious anemia and psoriasis...all autoimmune.

I like your attitude Jtxx

I'm glad I found this site, I find it very helpful. I live in the US.

Hang in there liverj!

[NaeNae]

I also had a biopsy which confirmed the pbc, btw

[Maddieroo]

Yes, it is not easy to deal with all of these illnesses and it is confusing. I have had lupus for 40 years and just diagnosed with PBC. My understanding is ANA is just a sign of an autoimmune response somewhere in the body and that AMA is specific to PBC (actually I don't have any AMA in my blood which is weird because the biopsy says yes, definitely PBC ) It is complicated and everyone's situation is different. Even though you are tired, you will have to keep track of everything and be your own advocate and not be afraid to ask questions. . Unfortunately the medical community likes things to be black and white, bam! diagnosis, bam! treatment. They don't deal well with complex issues like PBC or lupus.

[Tumbleweed41 in reply to Maddieroo]

You are right as rain, Maddieroo. As I have mentioned elsewhere, my ANA was 1:1200+ and don't believe I had the AMA, either. Have had 2 biopsies, both pointing to PBC. 2nd Dr. said PBC was stage 3. Well, I made 70, now we'll try for 75. LOL

[Jtxx in reply to Tumbleweed41]

Maddieroo and Tumblweed41. I am the same as you girls, I too am AMA Negative but the biopsy came back with PBC! PBC is a rare condition but only 5% of PBC sufferes are AMA Negative so we are an even rarer bunch!

At the end of the day we only get one life so I say make the most of it! Take care. xx

[Maddieroo in reply to Jtxx]

My doc says it is also rare to have PBC and lupus, plus rare to have AMA negative PBC. Why can't we have asrtonomical odds in our favor like winning the lottery!

[Jtxx in reply to Maddieroo]

Now that would be nice. One can dream. X

[Tumbleweed41 in reply to Jtxx]

When I was dx in '07 my Dr. said that I was one of his "special patients". I believe there were only 2 others who were AIH/PBC crossovers and we were the subject of discussion in his Drs meeting each week. lol. Dr. didn't say anything about the positve ANA/ negative AMA however. Nice to know we are doubly special. LOL

Be blessed. ga

[Elisa1]

I have had a very posative experience at Newcastle and visiting there has improved the quality of my life good luck

elisa

[Jtxx in reply to Elisa1]

Glad to hear that. Take Care. X