Did you have any symptoms of PBC before your diagnosis?
PBC may show symptoms prior to diagnosis, but many people also experience few or no symptoms. What symptoms, if any, did you experience?
Yes, I had symptoms for 15 years before before a allergy doctor found the problem. ^6 doctors over 15 years said my bilirubin counts were high, but the didn't run any other test.
I take ursodiol 500 '2x's a day. Ox bile 500. Testing of stomach, and colonosity. Misspelled it. Diet, vit. and, iron , staying active It sounds like you’re covering all the bases! It shows how much care and attention you’re putting into managing your PBC. Keep it up and I hope everything works out for you. -Latoya (Team Member)
No I did not have any real symptoms other than flat, round, red dots all over my legs that were itchy. My doctor sent me to an infection disease specialist, they couldn't figure out what I had, they ran a lot of blood tests. That didn't show anything other than my liver function was elevated.
It took a few years of not knowing what was wrong with me until 1 great liver specialist in SF California frustrated of not knowing, decided to run a blood test that no one else had done well it indicated I had PBC and my liver was damaged that's when I was placed on a transplant waiting list.That had to be really frustrating going years not knowing what was wrong. And then to finally get an answer and find out there’s already liver damage…that’s a lot to take in at once. I’m really glad that one specialist didn’t just brush it off and kept digging! It just makes me wonder what could have been done if it was caught sooner. How has being on the transplant list been for you so far? -Latoya (Team Member)
I did have symptoms.... but initially I went to the ER because of swelling and ankles/feet/belly, itching, spider angiomas. After all of the testing/4 days in the hospital (it was stage 3 cirrhosis)...the Hepatologist had me come in for my follow-up visit. That's when he brought up the PBC. They are SOOO similar in their symptoms it's crazy. He somehow could tell the Cirrhosis was 1st present separately from the PBC. For me, it seems some days are a double whammy.!!! (I've never had a biopsy or fibroscan though) So now it's progressed & the chronic fatigue does me in A LOT!! Playing around with all of the 12 meds, having constant labs/US tests, foggy/lightheadedness, dry mouth, losing hair. Those are the major ones. I never took naps unless I had the flu...now I take 1 or 2 little ones per day. Crazy!! I've gone through the transplant evaluations and I made the transplant list even though my numbers aren't horrible so I 'm happy I at least am on the back burner if anything turns south really quickly. God knows... I'll only get older & weaker.
