Newly diagnosed with PBC and starting Urso today

[Aishah88]

Hi all

I am 33 and have just been diagnosed with PBC. My routine bloods showed elevated LFTs and I tested positive for AMAs.

My GP referred me to a specialist who wrote to me to confirm it was PBC and said I needed to liaise with my doc to start on Urso. I spoke to the GP on Friday who, unhelpfully, told me she has been a doc for 18 years and never heard of/diagnosed this medication before and knew nothing about it but would prescribe it. I therefore was unable to ask any questions.

I am now on a waiting list to see the specialist. I have collected my prescription today and am going to start the meds. I just feel slightly overwhelmed and abit anxious give then I have not been able to speak to any doctor about possible side affects etc. At the moment I am asymptomatic and I am scared that starting Urso may trigger symptoms like itching etc. Has anyone found this to be the case? I also wanted to seek advice on whether I can continue to take vIt D supplements and whether I should add in any additional supplements?

I just feel like I have been left to it. Receiving a significant diagnosis by letter has been hard to get my head around and I feel overwhelmed.

Any advice would be really appreciated.

Thanks In advance

Aishah

[Hidden]

Hi Aishah88, am sorry to hear that there has been a lack of information regarding your medication - no wonder you are feeling overwhelmed! If you have a search for other posts, there should hopefully be some helpful tips for you. I'll attach a link to our information, and also a link to the PBC Foundation.

britishlivertrust.org.uk/in...

pbcfoundation.org.uk/

Take care,

Trust 10 x

[hells456]

It is overwhelming and being told like that and left to get on with it is awful. I was diagnosed with PBC 18 months ago and I found the Urso actually helped my itch. The only side effect I had was that I gained a few pounds, but I needed them anyway. I do take vitamin D, but no other supplements. I would continue until you can ask your doctor about it.

The thing with PBC is that as long as you take your Urso every day you stand a very good chance of slowing any progression to a crawl or even stopping it entirely. As yours was found incidentally and without symptoms it is likely you are at an early stage.There are so many people over on the Foundation group whose PBC has had no impact on their life whatsoever and no change in more than 20 years. Be careful of googling, most of the info is out of date (we've only had an effective med for 20 or 30 years) and the vast majority of us will live a normal and healthy lifespan.

I wouldn't worry that your GP hadn't heard of it, it is fairly rare. I would actually be encouraged that they were honest with you and they will look into it now they have a patient with it.

[vulnerable]

Oh my goodness ! How awful and insensitive of your medics!Can’t believe you were given a diagnosis by letter . And GP never heard of Urso - incredible! Yet gave you the script without a letter from diagnosing Dr???????

I was same stage as you when I was put on Urso. Ive had no side effects. It allowed me to continue life as normal for many, many years.

You should have questions at the ready for your Hepatology appointment and s as kid ensure you have someone with you . Four ears are better than 2 and it is a lot to take in. However, believe me you will be fine.

[Limalama]

Hi Aishah, yes, getting a letter like that would feel pretty overwhelming. I have PBC overlap with AIH, diagnosed about 18 months ago, and have been on Urso since then. Can I just agree with the other replies on here to try not to google as actually it's terrifying and you don't need to be terrified. Have a look at the links that Trust 10 posted, and also the PBC Foundation. Urso contains an ingredient that is already in the body, it gets rid of the itch in many cases and seems to be really well tolerated by most people. I've certainly never had any side effects from it, and hope you'll be in the majority too. My only complaint is that the tablets are quite chunky lol but you get used to them! When I was diagnosed my hep told me that I'd almost certainly die 'with it, not of it' and 18 months on I live a totally normal life. Everyone on here is on a similar path, so do ask questions and ask for any support you need. All the best xx

[Ikarix]

Hi Aishah, just saw your message . I was diagnosed 6 weeks ago (age 73) with PBC & started on Urso straight away . My Alkaline phosphate was 600. 6 weeks on blood test has showed my ALP is now down to 245 , which I think is amazing . I too was diagnosed without being able to see my gastroenterologist face to face & am waiting for a telephone consultation on Feb 2?with him to talk about these results . It is all a bit odd these days , what with covid & everything, but I feel I’m lucky enough that Urso is working for me . I hope your situation has improved since you posted 4 months ago . Best wishes .

[Gaspereaux]

Hi Aisha’s, just saw your post and wondering how you made out these last years. Are you ok, and are you being followed by your specialist now/.