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

[ninjagirlwebb]

Join the pbc foundation and they can advise how best to deal with your medical team situation.

Continue with the vitamin D. My liver specialist put me on the D since I was low. So if this is what you take already, it’s fine to continue.

There is not specific supplements recommended for pbc, but I do take a calcium supplement, mutli vitamin and fish oil. Calcium was added when my hepatologist (liver doctor) ordered a bone density test.

Urso dosage is based on weight. Most people tolerate urso well. When you pick up the meds, the pharmacist can inform you about urso and side effects. But do take the meds.

I didn’t even discuss urso in depth with my hepatologist. I only knew I needed the meds to treat pbc so I took it. He prescribed for me right after the 2nd opinion on my liver biopsy came in. I spoke to him briefly on phone. I think I was more focused on just understanding the condition so I had him explain all of that instead as I trusted my doctor, he said take the urso. I saw him multiple times after diagnosis just so i can grasp all of it. Talking to him calm me so that I can deal with it.

Hope this helps a bit. Don’t worry. Do not do “what if” scenarios, will drive you nuts. Just deal with stuff as it happens because at least that is reality and not something that may occur. Otherwise it will be too overwhelming.

If you respond to urso, likely you will have a life expectancy that is normal like the rest of the population.

[Aishah88 in reply to ninjagirlwebb]

Thanks so much for the response. That’s defintely reassuring. I have just had my appointment through for the specialist (October) so atleast I can ask him any questions then. In the meantime, I will just get cracking with the medication and connect with the pbc foundation as I have heard really good things

[ninjagirlwebb in reply to Aishah88]

Great! The bright side is that you got diagnosed early and definitively! Write down all your questions so you can refer to it at your appointment.

[Buddy2017]

Hi AishahI was diagnosed 10 years ago and I was and still am asymptomatic .

I can not tolerate the full dose of Urso due to it causing me to be constipated , I just take a reduce dose .

My GP just handed me leaflets about PBC as he too didn't know much about it , I'm sorry to say that at the hospital I have had experiences with some registrar doctors asking me if I've stopped drinking

On my very first visit to the hospital I saw a wonderful consultant who explained everything , he advised me to take Omega 3 and vitamin D . Your Consultant will most probably arrange an Ultra sound and a Fibro scan ( I get these every year ) and then regular blood tests to keep an eye on you .

Try not to panic ( easier said than done ) and good luck with your specialist

[butterflyEi]

Welcome to the group, great bunch of people on here and we are happy to share our personal experiences.

When you start your URSO the dose is weight related, 13-15mg per kilo. At 70 kilos I take 1000mg each day. You may find that to start with you might want to spread the dose across the day, as your body gets used to the URSO it is then best to take the whole dose at the same time. Not so much because of the medication but it is just easier to remember. I take mine with dinner, some take it just before bed other in the morning, just what suits you and your PBC best. URSO is apparently a medication that has few side effects and is easily tolerated although as Buddy2017 has experienced some do have problems. I have never been offered a fibroscan, however over the 15 plus years since diagnosis I have had one endoscopy, one colonoscopy, one dexascan and usually an annual blood test. Much depends on your consultant and hospita, for me seeing a consultant is patchy although I am more recently on the list of a truly lovely consultant, thankfully.

I take vitamin D+K spray by BetterYou which I source through Bodykind but you can get it from Holland & Barrett as well, I find the spray easy as it is one less tablet to take. Through the winter particularly I take a MultiVitamin without iron, also sourced from Bodykind.

Beware of any research you do on Google some it the information is well out of date and can be misleading. The PBC Foundation as advised is the go to charity. There is a Q&A with a specialist on a Thursday afternoon at 1400 hours on Facebook Live and you can also join in via ClickMeeting once you have become a member (free to join but donations gratefully received). Professor David Jones, OBE has recently written a book which can be downloaded or ordered from Amazon. PBC: The Definitive Guide to Primary Biliary Cholangitis. I have found it a most useful tool.

[millieja]

I have always been told to take with food. I am on 4 x 250mg a day so I take 2 with lunch & 2 with dinner. I am what is called a responder so they have helped bring down my LFT and I am able to eat without the nauseating feeling I had most of the time before taking URSO. I also take a Vit B complex with vitamin D3. I hope the Urso works for you - good luck & try not to worry.

[gillrich]

And join the PBC foundation xx accurate information all the time and so caring