Newly diagnosed

[Michiganpbc]

Diagnosed by positive AMA and elevated LFT's waiting for liver biopsy appointment for staging ....

[butterflyEi]

Hi Michiganpbc

Welcome to the group

I am guessing by your "handle" that you are in the United States.

Have you found PBCers Organisation in America - just in case

pbcers.org/ this link will find them or they are also on face book.

Hope you do not have to wait too long for the biopsy.

best wishes

[Michiganpbc in reply to butterflyEi]

Thank you! I have not found any US people or groups I will check the link thank you so much, I have a question should I be on urso while waiting for the liver biopsy? My LFT's are high and AMA positive I have Sjogrens and hemochromatosis, if this disease progresses shouldn't I be on urso while being worked up?

Thanks ahead for any info.....

[butterflyEi in reply to Michiganpbc]

Hi

To answer your question I must give the caveat that it is only what I have read from other contributors who were not on URSO prior to their biopsy so that a true result could be obtained rather than a result which may be altered by the URSO. 

PBC is apparently for most of us a slow progressive auto immune disease so I cannot see that it will be a dis-benefit to wait until after the biopsy to start on URSO.

I see in another post that you have a good liver specialist, that is great news.

If you have any concerns email the PBC Foundation (details through their icon at the top of the page) they are very helpful.  If you have not already joined it is very useful.  Free to join the members section has a wealth of knowledge and the Bear Facts magazine which can be viewed online is really helpful.

There is a closed group on face book Living With Liver Disease which is based in America again free to join.  They cover a wide range of topics including PBC.  Craig Cameron runs this and posts some really useful information although he is away just now but the page is being monitored by someone else.

Hope all goes well for you.  Let us know how you get on.

[Michiganpbc in reply to butterflyEi]

Thanks I thought about that later skewing the biopsy result with urso makes sense now thanks so much I will post when I get answer from my liver Dr. Have a good day there ....

[Belliver]

Hi Michiganpbc : I have Sjorgens as well as PBC & other auto- immune issues. I had a liver biopsy after my PBC diagnosis & honestly can't recall when the doctor wanted me to go on urso. I resisted going on it because I didn't understand its importance, in 2006 I was not aware of sites like this, which are so helpful. You don't mention any other imaging studies being ordered/ done. Strongly advise consulting or second opinion with a Hepatologist-- usually they are 'found' in transplant centers and/ or teaching hospitals. My liver biopsy didn't show much except some inflamation, really not very informative. I'm in the US too, it's almost like biopsy is on the checklist--- Also, you're going to find out that a lot of medical personnel (regular people too) don't know much about PBC, a lot of them only hear the "C" word--  ( I'm in the South......I don't tell anyone about PBC  unless they a doctor.) When you get your Rx for urso, keep track of manufacturer, so that you are aware of any changes, sometimes I get heartburn related to particular generic formulations of urso. Good luck

[Michiganpbc]

Hi Belliver!

I am seeing a good liver dr at U of michigan she has me on the schedule soon she said for a biopsy I had a liver scan yesterday waiting to hear about the results...

I read that they diagnose on a positive AMA and height LFT without a biopsy to start treatment so I sent my dr a email yesterday asking if I can start urso..,,

I had a blocked biliary duct on my birthday last year in June and was dying before they opened the duct so I am more anxious than most to start urso as to hold off that from happening again....,

I have hemochromatosis and get phlebotomy for that at u of M now , I think I am in good hands but this not being on med for PBC right now worries me....

[Becca75]

The biopsy isn't too bad - I was nervous about mine, but it ended up not being something I should've spent my energy worrying about. My biopsy was for diagnostic reasons (as it was thought I had either PBC or Autoimmune hepatitis). Report came back unequivocally PBC and possible also the presence of AH.

I hope your biopsy goes well and you get your staging results soon.  I'll be thinking of you!

[Becca75 in reply to Becca75]

Also as soon as I saw my specialist for the results and was diagnosed - I was put on URSO immediately (3 pills/day).

[Michiganpbc in reply to Becca75]

I hope my dr puts me on urso soon why wait for the biopsy if I have a positive AMA and elevated liver tests.....

[Michiganpbc]

Thanks Becca75 good to hear 

[Michiganpbc]

Hi all,

I forgot to update on my biopsy and staging from the liver biopsy, the biopsy wasn't bad at all after the numbing medicine wore off I was sore for about two weeks and now have no pain there from liver biopsy, the biopsy staged me at stage 2 PBC no cirrhosis but fibrosis which is mild scarring , she said not to worry that the URSO should slow progression and to take calcium and vitamin D because Osteoporosis can occur In PBC patients. So overall I am happy to have a confirmed stage to think about and if I don't respond to URSO there is another new drug she said so that us comforting to know right! She said she sees lots of PBC and most are living long normal life spans.....

I do have Sjogrens and hemochromotosis so I am being treated for these and am doing well both under control right now, if I stay active and positive keep stress levels down as much as I can I feel,pretty good most days, some days I have bad fatigue so those days I pace myself and move real slow, I eat a clean low fat diet and don't drink any alcohol....

Hope everyone is thinking positive today here hang in there medicines and technology are helping our disease.....

[Shine1 in reply to Michiganpbc]

Hi.

Now read this post- glad the biopsy led to them giving you a firm diagnosis- just having a label for symptoms can help a lot!

This forum is really good for being able to bounce ideas off each other and for reassurance on the harder days.

[Michiganpbc]

Yes! I was so in limbo not knowing what the heck was wrong with me and having a doctor misdiagnoses me for a year was even more depressing, I know medicine is not an exact science so I haven't been acting on my thoughts of writing the clinic manager about protocol for testing AMA in Sjogrens patients as PBC is very common.

On this group board I at least get support and up to the minute solid information from others, it's been a blessing!