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Welcome to our community! We’d love to learn a little about what has brought you here.
I was diagnosed over 10 years ago. I was donating blood for work and they said my blood was not doing what it was suppose to be. I went to a great dr who had treated my uncle who had and passed away in his 80s from PBC. I have been fortunate to have been under great doctors care. My present dr is a liver specialist. This disease runs in my family. Since my diagnoses I have been told I am at stage 2 and have remained there all this time. My aunt passed away being only in her 40s from this disease. This happened in the early 80s and at that time a lot was not know about PBC. In my opinion, she waited to late to seek out a specialist. She kept going to her General Practioner. The main problem I have is with fatique and not getting good sleep through the night. I have been on URSO all these years but was told of another drug for PBC but the nurse practioner I saw did not elobrate. I was wondering if it was a less expensive drug. URSO is a little pricey. Also was wondering if there is something to be done about sleeping better at night. I would appreciate any information about this disease.
I was just diagnosed with PBC. Its a lot to try to understand. What makes it even harder is the overlap autoimmune diseases I have along with it. I dont even know where to start and my doctors dont seem to be trying to help or clarify much. I know my family doesn't get it either and treats it like it isnt very significant. The exhaustion and everything with it is overwhelming. I was also put on Ursodiol ( sp) which i know nothing about. Any support, help or info is very much appreciated.
I’m really sorry you’re going through this. A new diagnosis is a lot to take in especially when you already have other autoimmune conditions in the mix. It’s also incredibly frustrating when doctors don’t explain things clearly and family minimizes what you’re dealing with. I hate that you have to deal with all of this. If I could make a suggestion, I would start by creating a list of questions as you think of them. There are resources here that can help you with navigating your diagnosis. One thing for sure, you don't have to go about this alone. That's what this community is here for. To start, I want to share with you an article about the medication, Ursodiol. You can access it here- https://primarybiliarycholangitis.net/ursodiol. After your review if you have any questions about it please don't hesitate to ask! We're here for you and glad you're apart of our community. Kindly, Latoya (Team Member)
Thank you for creating this space for PBC patients. It is needed! This is awesome.
I was diagnosed with PBC on May of 2021. I am here to learn and to be able to help others who are navigating this issue so they do not feel alone in this journey.
It's so nice to have you here,
! No one should have to navigate PBC alone, and having you here to share your experience and support others is so needed and appreciated. So thank you for being here with us! I look forward to hearing and learning more about your journey with PBC. All the best, Latoya (Team Member)
