For all of our new members, PLEASE make sure one of the first things you do after your diagnosis is to join The PBC Foundation. It's free. There is so much accurate and up to date information there on the disease itself, glossary of terms you might not be familiar with. place to record your lab results, research and so much more. This organization is passionate about educating both patients, health care professionals, and families about this complicated disease.
pbcfoundation.org.uk
When first diagnosed it is overwhelming. I know this from my own experience as well. Getting accurate information is so important. Please don't google for information. Often it is inaccurate and out of date.
Other sources of good information are the Cleveland and Mayo Clinics' websites.
Make sure you are on the right dose of Urso. This is SO important. On the PBC Foundation website there is a very informative link and use of the calculator. Please take the time to look at this. Urso dosage is ONLY based on your body weight - NEVER on lab results or symptoms.
Help needed: health, biopsy and lab contradict
New GI states Urso will not help my PBC
To take or not to take Urso!!!!
