First of all, I started this post and lost it. I hope it doesn't post twice. If so, I apologize.
I was diagnosed in January with PBC - sort of. Short version - two years ago my lfts sky-rocketed with no warning. Had no idea of the reasoning. Repeated the test immediately to see if it was just a mistake but they were still high, but already lower. Repeated in a month - same thing: way too high but lower than the first time. Then started checking every three months. My GP/ primary care doctor suggested I see a gastroenterologist. By the time I saw him, my levels were elevated but almost normal. He decided to test AMA and ANA. One was positive, the other was not. Shortly afterwards I contracted pneumonia and when I was in the hospital, they did a CT scan of my lungs which caught parts of my liver. It looked nodular and otherwise abnormal. I did not like the gastr doctor I had gone to so I tried another one who I like much better. He took a cautious route and ran blood tests again - both lfts and the AMA and ANA. Again, kind of questionable results, so he said the only way to be sure was to have a liver biopsy. He suspected I had either PBC or possibly auto-immune hepatitis. I had the biopsy - and incredibly, it was still inconclusive. My doctor sent the results to a liver specialist at Johns Hopkins for a second opinion. That doctor thought it might be an overlap of both PBC and autoimmune hepatitis. The issue is that the two diseases have very different treatments. Then my doctor had me pick up the actual slides from the biopsy and see a liver specialist from Mt. Sinai Hospital in NYC who is doing research on the two diseases. She took the slides to her pathologist and they informed my doctor that they think I had PBC. I can tell that my doctor thinks it's both but he is following the advice of the expert.
I've been on Urso now for three months. I had my first follow up this past week, having had blood drawn the week before. Not only are my lfts not lower, they are higher. I have to say that I'm discouraged. They're not dangerously high but they're definitely significantly higher than in Feb. The doctor said it's ok and frequently it takes longer for the Urso to start working, maybe 6 to 12 months. But I wonder if this means we're treating the wrong disease. I hate taking anything I shouldn't - since it has to be processed by my liver which is clearly not happy.
So I'm wondering, how long did it take for the rest of you to see positive results? Thanks.
For any new people, if you saw my posting when I first started, I had side effects - headaches, flushing and itching - when I first started the Urso. I'm happy to say that all those side effects dissipated within two weeks or less and I have none now, so stick with it.