First appointment

[BabyK]

Hi I was diagnosed with PBC 4 weeks ago. I have got my first hospital appointment in a few weeks and it's in the gastroenterology clinic. Is this usual and what can I expect?

[wildlifekiwi]

I was diagnosed by my GP late July and finally got to see my gastroenterology consultant two weeks ago. Unfortunately, I didn't research it at all as I was strongly advised by my doctor not to worry or google about it until I at least spoke with the consultant (and to be honest I didn't believe her as I didn't think I was that sick and that I was just run down/burnt out). I really regret that I didn't research because when I met with him, it was all a blur, I hadn't processed it and I didn't have any questions prepared (and then I had a million and one questions after I left). Make the most of your time with him to ask as many questions as you can. Good on you for joining here and researching, you're smart!

In terms of my next steps when I met him a couple of weeks ago, he confirmed the PBC as and has booked me in for several Liver Blood tests (Oct/Dec/Feb) and a scan for scarring. I also have a follow-up appointment with him in April next year to confirm the stage I am at. A letter has been sent to both myself and my GP in terms of next steps, my latest liver results and treatment. I still have not received this letter and the waiting has been really hard. I am anxious to get started on the Urso so I tried to get an emergency appointment last Monday with my GP. They were unbelievable unsympathetic and cold to book me a sooner time as I looked healthy and didnt believe I needed urgent. I can't get in with my GP until November 24th (unless I can show them a letter from the consultant it is urgent to start my Urso - that is the letter that hasn't arrived yet)! As I have chronic backpain daily for the last five years I will be pushing for a bone density test as well.

My advice, make sure to ask about your next steps and when you will start treatment on Urso if he confirms - as its a long stressful wait for a letter if you miss the chance. If you are showing symptoms ask him about treatment for these as well (as its a long time to wait for your follow up appointment and your GP may not understand the condition fully to advice)

Good luck and I hope all goes well for you in terms of next steps

[BabyK in reply to wildlifekiwi]

Thanks for your info. What is urso?

[BabyK in reply to wildlifekiwi]

I know what urso is. It's the meds the doctor gave me when i first was diagnosed. I'm on 375 a day

[shaza1966 in reply to wildlifekiwi]

Hi wildlifekiwi try phoning the gastroenterologist department at the hospital and speak to the Secretary of the doc you seen there they will let the doc know and explain how anxious you are about the letter they will email your doc . Stressing is bad for our condition best of luck

[ninjagirlwebb]

Read this & prepare any questions you have for the doctor. This is the guidelines for the US.

aasld.org/sites/default/fil...

[Hidden]

If you’ve not already done so join the pbc foundation the information on their web page is upto date. It’s the best thing I ever did both for correct information and my sanity. I’ve added the link to the guidelines it may help you compose some questions for your consultant appointment. Hope it all goes well let us know how you get on.

I see your on urso your reply post said 375 , was that mg per day, it seems very low. Urso goes by body weight you may want to check your dosage with the consultant.

pbcfoundation.org.uk/upload...

[EileenUSA]

Hi,

I strongly agree with Candy12's advice. That link she provided gets you to a fantastic set of questions and answers -- will prepare you 100% for your appointment and beyond. It's a fantastic resource.

The PBC foundation out of the U.K. sponsors this peer

support group here at Health Unlocked and if you join the foundation ( free) you'll have access to lots of great info. But definitely follow Candys link and get that document before dr. appt.

[whippy31]

Hi BabyK

I was diagnosed 4 weeks ago when I went for my first appointment in the gastroenterology clinic..When the consultant said I had PBC I’d never heard of this condition so was at a loss ,didn’t have a clue what to ask her ..She told me to go home a google the condition also to look on the British Liver Trust website!!

So I’m guessing this is the normal procedure ,the consultant started me on 500mg of URSO for 2 weeks then 1000mg until my next appointment which is in 6 months..

My advice would be to gather all the information you can ,write down your questions and get as much information as possible,that’s what I’m doing ready for my next appointment..

Fingers crossed it all goes well for you🙂