We have had many new members in the last month or so. I wonder what anyone had to go thru to get to their diagnosis?
For any of our members, did you have difficulty getting a definitive diagnosis? I know personally it took several years for my liver enzymes to increase enough to come to a diagnosis of PBC.
I know all too often symptoms are ignored by health care professionals that should lead them to at least your liver enzymes.
At first my primary doctor thought I drank too much and honestly, I was a pretty good wine drinker. She told me to lay off the wine which I did and a few weeks later my bloodwork was no better and weeks after that much, much worse. She called me and said it was something else but she didn’t know what. She sent me to a gastroenterologist and they did a ton of bloodwork and it came back PBC. It was probably 3 months to diagnosis and then I had a biopsy. It came back F3 fibrosis- the ultrasounds and other scans always say cirrhosis. The hepatolagist said I probably have had it for many years 😟 I feel fine most of the time though.
Pam
Thanks for sharing with us. Are you taking Urso now? If you have cirrhosis are you getting a fibroscan to monitor the 'stiffness' of your liver or how cirrhotic it is? Your lab work should be drawn every 3-6 months. Were your liver enzymes elevated from the very first time you had them done? when was that? Sorry for all the questions. I just want to make sure you are getting the best care if cirrhosis is already found.
Yes, I have been on Urso for 7 years. I have bloodwork and scans every 6 months. Sometimes it’s ultrasound and sometimes it’s MRI.
It sounds like you are being well cared for. I hope with taking the right dose of Urso that your 'numbers' are improving. Are they improving for you?
Hi Donna and everyone! I am in the UK and got my diagnosis via a glandular fever test as I had chronic tonsillitis over the pandemic years and antibiotics didn’t work. As an aside, they found my enzyme levels were off the scale. So far, there seems to be minimal damage to my liver, but I have had fatigue, although that has been improved by a tonsillectomy. Urso has not reduced my numbers as much as wanted by my Consultant so we are going to explore other options. So, my diagnosis was accidental. My Consultant believes I may have had the condition for years, if not most of my adult life, as I have a history of high enzyme readings in my notes that were consistently put down to other things. I think the increased knowledge of PBC is why I have a proper diagnosis now. To anyone newly diagnosed, don’t panic, this is liveable with and usually responds to meds. This group is also really valuable for experience of symptoms. 
Thanks for sharing your story. Having elevated liver enzymes dismissed as something else is all too common, I 'm afraid. Can I ask a few questions? what were your ALP numbers in the beginning and now? Are you on the right dose of Urso? That is sometimes the problem... so glad you finally did the right diagnosis. Your advice to newly diagnosed patients is 'right on'!
The more we learn the less scary the disease can become. Sounds like you have learned from your own experience. My daily question for today is "Tuesday Tips" for newly diagnosed patients. Your advice is perfect for all of us in fact.
my diagnosis was quick. At my routine labs my Alk Phos and AST were elevated. My internist immediately started testing with AMA, ANA , IgG, IgM, IgA. He covered it all. I was diagnosed as soon as these labs came back from a lab in Austin. I was then referred out.
so glad your story was one of not wasting any time. All too often even elevated liver enzymes are dismissed or overlooked often for years. Sounds like you are getting the right care. How are you doing on the Urso? Is it bringing your numbers down? Thanks for sharing your story with us.
I wasn’t able to take URSO. I’ve been on ocaliva since 2017.
did you have any side effects from the Ocaliva that you needed to address? Is it bringing your 'numbers' down?
I’ve had no side effects on 5 mg. I weighed 112 lbs when I started it. I slowly but steadily was losing weight. Within 4 or 5 months I was at 106. It brought my levels down quickly. However, in the last year my levels bounce up and down. Otherwise, I’m steadily on the go. I kept mentioning the weight loss but there is no other option for medication at this time.
thanks for sharing your story.... we all have fluctuations. Look at the overall trend to get the true picture of whether the Ocaliva is doing its job. Continue to do well!
In 2015 I was feeling very bad. At the time I was thinking that maybe I had Lyme disease because of my job as a tree inspector. But they told me after my blood test resault in 2015 that I did not have Lyme, thats it, thats all. It took me until 2020 to have the diagnostic with a second hepatologist after seeing many doctors and thinking that maybe I was crazy. A few months after that blood test I did started to test positive to AMA, 1/320 but the first hepatologist that I had seen said it was not PBC because my alt was not high at the time of his blood test, even if I was AMA positive. I was so discouraged ! Was crying when out of his office. This makes me so mad when looking back. It was obvious that something was going wrong with me at the first blood test in 2015 but the only thing they said to me is, you dont have Lyme disease. When I saw the seconde hepatologist she told me, it is not in your head, you do have PBC, I started crying. I now test AMA positive 1/ 620. So dont give up if you are living this at the moment, keep on fighting for your well being !
continuation of blood test in 2015.
Thank you for sharing your story with us. This happens SO often that no one really knows what to do with some of the lab results so nothing is really persued. Your labs look good. Do you ever expect the doctor to call you with these results?? Sorry, the follow up is so poor for you. What was your initial alk phos number? it's sure good now.....
ALT and AST and GGT was high (H) alk phos was ok and high ferritin. At that time in septembre 2015 I was not testing positive for AMA but some of my liver enzymes were to high as the GGT. That should have been a red flag and direct me to another doctor but they didin't. Was at stage 2 fibrosis at my first fibroscan. I was put on ursodiol 1000 mg per day in 2020 and my hepatologist augmented it at 1500 mg per day in 2022. At my last fibroscan in 2023 everything was back to normal ! That is wonderful and my hepatologist also ! She says that I am a good responder to ursodiol.
mine started in December 2021 high levels alp 1300 alt 835 was in hospital for 2weeks with no answers had a biopsy in the end but still after that never had answers discharged and said come back in one month for bloods then February 2022 bloods was still high and started me on urso had bloods last week alp still 400 have consult on Monday I’m hopeing will get answers and something else too help bring my levels down!
please make sure the dose of Urso you are taking is the correct one. It is 13-15mgs/kg of body weight. It might be a simple change in the dose.... if you are, then often times the addition of fenofibrates has shown to be very helpful. If you google "Fenofibrates for primay biliary cholangitis" there is a good article from Gastroenterology Advisor, April 3, 2023. Might show this to your doctor. It often seems to work better that adding Ocaliva - just a thought. Let us know how the appointment goes on Monday. How often do you lab drawns? should be every 3-6 months according to the Standard of Care.
Yes they upped my dose of urso in march last year to maximum dose so I think I may need a second treatment!!! I will look at that thank you,
yes, please look at the Urso calculator. It is only based on your weight - never on lab results or symptoms. couple of questions? how long have you been on the Urso? is it bringing your numbers down?
Since February 2021 has brought my numbers down from 1300 too 400 but taken all that time and still not low enough! Yes I have done that and I’m on the rite dose for my weight!
One of the reasons that biopsies are rarely used for diagnosis now is that the specimen of liver tissue is only 1/50,000 of the area of your entire liver. The chance of getting the 'right' spot that is affected by PBC is slim. If another liver disease is suspected like auto immune hepatitis, then a biopsy is indicated. If your numbers are not continuing to improve then I hope they do find another therapy that can help. Let us know.
After five years of elevated liver enzymes (my GP told me it was nothing to worry about), she finally sent me to my current internist. Before I went my GP told me it was Autoimmune Hepatitis. I was worried sick until I saw the internist. He said definitely not AH but PBC. He sent me for a liver biopsy to make sure. My numbers immediately went down on URSO. I just finished three weeks on fenofibrate for my itch - it did nothing for it. Yesterday, the first time in 7 years, my blood work showed my AST and eosinofils were up. Hopefully they will go back down now that I'm off fenofibrate.
No diagnosis as yet 😔
New Diagnosis of PBC and Prescribed URSO
New here! Question about Diagnosis 
Mid diagnosis perhaps?
Were you a smoker prior to diagnosis?
