When do you know if Urso is working?

[sjt58]

Hello,

I was recently diagnosed with PBC and just started on Urso . How long does it take before they know if the medication is working? When do they repeat the labs? Hoping it works for me...

[butterflyEi]

I believe the process is a bit different in the USA from UK and I guess it will depend on your insurance and your specialist. Hopefully someone from the USA will be able to give you a better reply.

However, it is about one year to know if you have fully responded to URSO but I have read of people from America who have their bloods taken every three months. For me in the UK it is an annual thing but I have had a diagnosis for over 16 years. The percentage of URSO responders is high and fortunately for most PBC is a slow progressing auto immune disease and once on URSO our outcome is good.

Sorry this is not a definitive reply for you and I am sure as a newly diagnosed person you have many questions. If you have not already done so, join the PBC Foundation, free to join but donations help keep them going if you are able. They are currently hosting various support sessions details of which are on their web site. They also have a page on FaceBook.

There is now (only recently published) a book by Professor David Jones, OBE which can be found on Amazon which is a very useful guide.

PBC: The Definitive Guide for Patients with Primary Biliary Cholangitis:

I hope you find the above helpful even though your question has not been truly answered.

[sjt58 in reply to butterflyEi]

Thank you so much! I ordered the book from Amazon.

[ninjagirlwebb]

I am in the US and see my hepatologist every 3 months and we do labs whenever I see him.

But I remember testing a month after taking urso and the bloodwork went back to normal. Having said that the alk phos tends to fluctuate every time, so the doctor looks at the trends and not just isolated labs. So sometimes it goes a bit high and back to normal. Doctor said he likes the alk phos to be under under 150. Some doctors would say under 200. So that depends on the doctor.

I think you will respond to urso. Most people do. Make a list of your questions and have your doctor discuss with you next time you see him/her.

I usually put together an agenda for my appointments and send it to my doctor via patient portal so he just pulls it up and discusses my list when I see him.

[tiscse]

It will depend on your doctor I would say. But probably every 3 months to start with.

[Odieweb]

I have had tests every 6 months. You respond to URSO if the tests return lower numbers, which fortunately for me, mine did.