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 Often it is inaccurate and out of date.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.
What is the timescale for you for the review of the urso meds?
Should I take this Urso?
Young PBC New Diagnosis
ESA - Work related group need advice to be move onto the support group please
What grades or stages are people at? Especially in relation to urso.
