Hi there! I was just wondering if anyone on this board has been diagnosed with Primary Billiary Cirhosis. (PBC). I have had this disease for the past 9 years and while I am doing fine now, sometimes I have flare ups and it would be nice to be able to "talk" to others with this in common. I don't expect to have a large response since PBC is not very common. Usually it is found in women and diagnosed between the ages of 35-55. Just wanted to know if there was anyone else "out there"!
For me that is the million dollar question. I have tested both positive and neg on the AMA blood test in the last 3 weeks. Am going for a third test to see which one is correct. My alk Phosphate is 173 and no one can figure if it is coming from my liver or my bones. That is one of the reasons for the blood the first time.
What stage are you in? Have you been confirmed by a biopsy or tests? I just had a biopsy last month because one of my lesions, out of eleven, looked funny. They said that I would probably have to have another biopsy to verify whether I have PBC because they were not looking for it and PBC can be scattered in the liver. They only took samples from the core of the lesion and a little surrounding the lesion whiched showed mild steatosis (fatty liver).
****** the mayo clinic, think you find what your looking for there. I did!
I have had three AMA test done. The first one was 2.7, the second was 2.0. My doctor had me to wait for a couple months and told me to take another test. This time it was 2.5. I go back in a couple of weeks to see what he wants to do. He seems to think that I could have PBC. He is my gastro. doctor. I have digestive problems as well. he found this when he was looking for why I was an anemic. I know I am tired a lot, somedays more than others. I am trying to learn a little more about this, but I am also waiting to here what he wants to do. Any info would be appreciated.
I had given up on this post because of the lack of response. I see that I am not alone. For those of you asking questions, here is my story.
What lead me to the doctor was the fact that I itched from head to toe. Nothing I tried did any good. When I went to the doctor, she did the usual tests.This was a military hospital as my husband at the time was active duty Air Force. She gave me a medicine called Questran for the itching. I went home to await the results of the blood tests. She called me at 7:30PM that evening (this is VERY unusual for a military doctor) and told me she wanted me back at the hospital at 7:30 the next morning for an ultrasound and repeat blood tests. My ALK Phos was 542 and my cholesterol was 522. I was SCARED!!! To make a very long story short....we did all the usual tests, ultrasound, CT and redid all the blood work. She couldn't figure out what it was so she referred me to a Gasto specialist (civilian). I went to him and he diagnosed me at first with Autoimmune Hepatitis. He said that was his diagnosis because I didn't have the antibody that usually comes back positive, but to be on the safe side he didn't want to take any chances. I was put on Prednisone and Immuran. He did a biopsy, but the sample he got wasn't sufficient to get a good diagnosis.(That is a whole other story). The itch was put under control with the Prednisone so I didn't have to continue the Questran. After two years, my health insurance changed and I had to change physicians. That was the best thing that every happened to me! The doctor I went to then, looked at my record and recommended an ERCP. He said that he thought I had PBC and not Autoimmune Hepatitis. I did the test, he put me on Actigal and slowly stopped the Immuran and Prednisone. I don't want to ramble on but over the past 10 years, my liver functions have gone down and back up, it is a part of the disease. My numbers stay around the high 300s and my cholesterol never goes below 240, but I have a genetic reason for high cholesterol anyway. I have never been jaundiced so that is a good thing. I am currently seeing a wonderful Gastro and things are pretty much where they started, hence the word "Primary". I am not any farther advanced that I was when diagnosed. I have had ultrasounds and biopsies a few times, the last biopsy was in 2000. As long as my numbers stay reasonable, there is no reason to repeat it. I will say that by being on the Prednisone for so long, I have osteoperosis. Thank you Doc! Other than that, I have a fairly normal life. I limit my alcohol intake and only drink wine and beer. Once in a VERY great while, I'll have a good old margarita.
Hope I haven't bored y'all with this. Thanks for responding. Let's keep in touch.
MaryKathleen.....what kind of digestive problems do you have? I had a ton before and now I can eat anything I want....love to talk to you about it.
I have Gerds and have had the Lap nissen surgery back in 1997, but the wrap has slipped and I am experiencing heartburn and chest pain again. I also have had my gallbladder taken out when I had the surgery. As far as repeating the surgery, they say if it slipped once it would slip again. So unless it gets real bad they want do another operation( I don't want that anyway). I am able to eat and keep food down at this time. I have esophaguel spasms, IBS, and slow digestion. I really try to eat right, my cholesterol is good. I am not sure about my alk phos. they told me once they were up and then went down. I have no idea what the numbers are. I really should ask. All I know I have been unusually tired, and after blood test after blood test thet told that PBC was very probable. I go back the 28th. I hope they tell me something then. I know I do itch more, but I also have dry skin, so I am not sure if that is a PBC problem or just winter itch.
Thanks, muzkmkr for your story and no it wasn't boring. It sounds very much like mine without the military docs.
I wonder if this disease is still so new to some doctors that they are not sure what to do unless they have had many patients for many years dealing with it.
I am going back to my hepatologist tomorrow for a third AMA blood test, this time at no charge. How cool is that? first time I tested pos (29.8) through my hep lab and the second time neg (.02) through my primary's lab.
There are going to be so many eyes on this test that I am sure this will be the winner. LOL
I too have itching--legs, back of my neck, right side of upper torso, etc. I don't know if this has anything to do with anything or just winter and tags on my shirt. I am in the process of removing all tags and spring is coming so I should find out for sure in a month or so. I also have osteoperosis, high cholestrol, ab pains, low protime, as well as the high alk phosphate.
I have been looking up, and haven't found, whether GGT needs to be abnormal along with testing positive on the AMA test. Do you know anything about this?
Hello--I was diagnosed with PBC in Feb. 1998--Itching of hands, feet, legs arms and abdomen are all normal symptoms. You are correct about the doctors not knowing much about this illness. Most times you are the ONLY one they have seen with it. When I was first diagnosed I no longer had a name but instead was referred to as "THE LIVER". The typical response I have recieved by doctors is that they think it will be "interesting" to treat you as a patient. If you have insurance to help with medical bills I suggest that you research your area and find THE BEST hepatologist in your area. If you need to, travel to a nearby town for treatment but try to find someone who is familiar with this illness. It will pay off in the long run and you won't spend years being used as a guinee pig for a doctor trying to find a cure.
I don't know if I can answer any of your questions but I would be willing to give it a try.
Well test #3 of the AMA blood test is complete. Drumroll>>>>Positive! UGH! My Hepatologist's lab is now sending my blood to lab #4. What gives????
My doctor keeps going back to the same old song and dance---normal GGT no way you have PBC.
Again, I keep reminding him that my alk phosphate is rising everytime he draws my blood now at 173. The lab that ran my last test said alk phos. is normal 0-90. Hello! I have osteoprosis(sp?), itching, and now positive (twice) ama blood test, along with other problems.
Now I have done some research myself and found that once someone has tested positive via the AMA blood test the next thing they look at is if the alk phos. is high. If so, they have PBC. They go hand in hand. Period..
I came across a video that I think that I might just purchase and mail to my hep. doc. It stated from a well known doctor from Canada, that there are a total of three things that you can go by-- positive AMA, high Alkaline Phosphate, High GGT and Osteoporosis. I have three out of four.
The ama and alk both come from the bio ducts, ggt from the liver.
I just don't get some of these doctors.
Well doc said that I should hear something by the middle of this week regarding lab #4 and tomorrow is Wednesday. We shall see.
I feel like one of those soap opera's when ever my mom or sister call, tune in next week to see if teresa has PBC or not. The sagga continues!
Thanks guys for listening, I just really needed to get this off my shoulders.