When to test for urso response: Hi. Can... - PBC Foundation

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When to test for urso response

pottery1
pottery1

Hi. Can anyone tell me when i should be tested to see if i am responding to urso. I have been taking urso for 1 month and have been diagnosed with pbc. I am from the uk.

14 Replies
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3 months i think

Tetris73
Tetris73 in reply to Ballymahon2

Ive been taking it for a year and going back next week for my first appointment since I was given the Jedi script.

BethRL
BethRL in reply to Tetris73

Every month for the first three months.

I have a ultrasound every 6 months after 25 years ok I now have it 1 every year

Thanks everyone. All so varied. I guess it depends on your consultant and maybe other factors.

I 'think' it's usually every month, for the first few months, then every 3 months for a while, then down to once a year. The time periods may depend both on how well and quickly your bloods normalise, and on how you feel and the various side effects, etc. I would check with the 'PBC Foundation' advisors: link to their website at top of page, with phone and email contact-details to the advisors on the site. I believe there will be an 'official line' on this, but it seems a lot of GPs and even specialists do what suits them.

Remember, PBC is pretty rare, and a lot of Medics still don't know what they are supposed to know about it. The 'PBC F' may have copies of the UK guidelines that are supposed to be followed, on their site, so you could copy these and give them to your Medics. I believe there are official guidelines that all Medics should follow, but they may be different in different countries.

pottery1
pottery1 in reply to GrittyReads

Thanks GrittyReads. I had a quick look last night on the pbc foundation but i 'll have another look re guidlines.

I check in with my hepatologist every 3 months & he does my blood work. I am in US.

I was diagnosed 6 years ago and I only see my consultant yearly and they check my liver function through blood tests and ultrasounds. I don’t think though that they are checking whether you are responding to the urso, more how your liver function/ condition and scarring is overall. PBC is so rare and so little understood and I believe urso isn’t yet clinically proven it’s more a case if they think that it helps to reduce or prevent scarring. That’s as much as I’ve been told anyway or found out online via the British Liver Trust. I think also like most of the UK it’s a bit of a postcode lottery what treatment/ check ups you get.

Urso is known to be effective to responders. If treated at early stages of pbc, life expectancy is same as the normal population as per research article.

ncbi.nlm.nih.gov/pmc/articl...

The prognosis of PBC has improved because of early diagnosis and use of ursodeoxycholic acid, the only established medical treatment for this disorder. When administered at adequate doses of 13–15 mg/kg/day, up to two out of three patients with PBC may have a normal life expectancy without additional therapeutic measures.

hi pottery , i take it you have been sent to your first gastroenterology department at the hospital if so then did the doctor not tell you to make an appointment for the next three months that's what happened with me . went every 3 months for the first year then up to 6 months visits for the next year then once a year . Unfortunately for me i'm back down to every 6 months . where abouts are you in the uk , i am in Scotland .

kind regards Shaza

pottery1
pottery1 in reply to shaza1966

Hi Shaza, no ive not been to see the specialist yet. Ive just received my first app for the end of April. I was prescribed Urso by a gastro at my initial assessment at a mobile unit and he made the referal to specialist. My own gp doesnt seem to know much about pbc. Im based in Manchester. Just glad my app came in the post, felt a bit abandoned.

My consultant (uk) said a year before he would be able to tell if urso working

That’s what my GI said also. Fibroscan in one year to check progression.

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