Just want to say hello

[bbobb55]

My journey began about 6 months ago when after a 10 day course of Augmentin I noticed that my urine was a bright orange and I was itching all over my body. I also had incredibly bad indigestion along with constipation. This lasted about a week and I went in to see my physician. The labs came back with high LFT's and a billirubin of 4.0. They did an ultrasound and found no stones or billiary blockage. My labs were repeated in a week and my billirubin was back to normal and my LFT's were coming down. Within a few weeks all of my LFT's were normal except the alk phos. At this point he felt that my liver responded adversely to the Augmentin. I then saw a gastroenterologist who did an extensive blood workup. Everything was normal except for the AMA titer which was 1:160 and my alk phos was mildly elevated. All signs pointing to PBC. Last week I had a liver biopsy and today my doctor and I viewed the findings. They came back inconclusive with only a few lymphocytes seen in the bile ducts along with mild hepatitis. So now my doctor is going to call the pathologist and if he does not agree with the PBC then the liver biopsy will go to a hepatologist at The Mayo Clinic here in Phoenix. I am going to start on Urso after my doctor speaks with the pathologist just to get me going. If I do have PBC I suppose I am in the very early portion of stage 1, but time will tell. At this time I have no symptoms to speak of and I feel great. I continue to assume I have PBC because I have not heard of anyone having a positive AMA titer along with elevated alk phos and not having PBC. I will write in a couple weeks and give an update. Nice to meet you all. Bob

[Magnolia]

Welcome Bob, it took the Mayo Clinic to diagnose me in 2003, after I had already had a biopsy in 97, with no diagnosis actually made. I even had elevated LFT's in 93 and no dr. followed up to see why. At the time of the biopsy in 2003, it came back as PBC, AMA negative, stage 2. I don't know my stage now. I'm sure if yours is PBC it is an early stage.

Magnolia

[Kluith]

Hi Bob,

I am a 54 year old female living in Litchfield Park, Az. I was just diagnosed with PBC and had a liver biopsy last Monday. I haven't been able to see the doctor yet because everyone sees the NP first. Then she consults with the doc. I'm frustrated and scared because I can't get in to see anyone in that office again to review results until Sept 28th and then to see a NP again! I plan on telling the office that I want to actually see a doctor the next time. I haven't even started on Urso yet because the NP told me she wanted to wait until our next appt. This just doesn't make sense to me.

I was wondering though how you are doing? I know it has been three years since you posted here but, I thought maybe you could share some tips on dealing with this. Thanks for taking the time to read this.

Kathryn