I've just been diagnosed with PBC - in last... - PBC Foundation

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I've just been diagnosed with PBC - in last four months I've been taking urso 2x a day now I'm taking 2x250mg at bedtime- anyone like this?

Bbbbbbbbbmmmm profile image
21 Replies

Just wondered as i thought taking it at bedtime was for disolving gall stones. I didn't know about at change to the prescription until the pharmacist explained.

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21 Replies
Catherine3883 profile image
Catherine3883

I was told to take3 in the morning and 2 at night. I’m on Urso 250mg but I’m way over the recommended dose based on body weight

Bbbbbbbbbmmmm profile image
Bbbbbbbbbmmmm in reply to Catherine3883

I had been taking two in the morning and two on the evening after food. But now it's been reduced by half and at bedtime. Just wondered if anyone knew an explanation for the change. I thought it was based on body weight - but I wasn't weighed this time.

MrsPearson profile image
MrsPearson

Just been diagnosed with PBC. I was taking Urso 3 times a day but after 3 months they told me to take it all at night.

Bbbbbbbbbmmmm profile image
Bbbbbbbbbmmmm in reply to MrsPearson

Do feel any different after changing when you are taking it? It's just I felt really grotty yesterday having taken it at night for the first time. I'm in West Sussex btw

Catherine3883 profile image
Catherine3883 in reply to Bbbbbbbbbmmmm

Where are you in West Sussex as I am in Bognor

Bbbbbbbbbmmmm profile image
Bbbbbbbbbmmmm in reply to Catherine3883

I'm not far from you - I'm seeing Dr Moran at St Richards

SunnyXXOO profile image
SunnyXXOO in reply to Bbbbbbbbbmmmm

Atarax takes itch away, cause itch before taking effect. I took it but made me Zombie like. Atarax is a antihistamine.

Bbbbbbbbbmmmm profile image
Bbbbbbbbbmmmm in reply to MrsPearson

Since changing to taking it at night I've been really itchy and felt a bit grotty - do you think it's been better for you to take it at night. It's only been a few days so maybe i should see if these symptoms subside.

MrsPearson profile image
MrsPearson

Unfortunately I have had to have my gallbladder out so too late for Urso to help. Which county do you live in? I am in hampshire

AngelaBarron profile image
AngelaBarron in reply to MrsPearson

Hi. I'm not sure I understand this. I had my gallbladder removed over thirty years ago and was diagnosed with PBC about three years ago. I was prescribed URSA and initially responded well. I am well and don't have many symptoms fortunately. How is URSA not any use for you just because you have no gallbladder, or have I got the wrong end of the stick? Not unusual for me I have to say!

MrsPearson profile image
MrsPearson in reply to AngelaBarron

No I have PBC Angela which is why I take Urso but what I meant was it is too late to help my gallstones as my gallbladder had to come out.

AngelaBarron profile image
AngelaBarron in reply to MrsPearson

I definitely got the wrong end of the stick! Sorry about your gallbladder, must say I can't say I've missed mine much and certainly not the pain but I do wonder if that's what triggered my PBC. I had lost a significant amount of weight very quickly prior to the gallstones. But there you are, solve one problem and find another. C'est la vie!

MrsPearson profile image
MrsPearson in reply to AngelaBarron

I am with you on the gallstone and PBC thing. There are so many people who have had there gallbladder out either before or after being diagnosed. I am desperately trying to loose Weight now

AngelaBarron profile image
AngelaBarron in reply to MrsPearson

Good luck! I've been trying all my life! Trouble is I just love food! Keep strong though, and don't let PBC rule your life. It's just another of those things!

donna01 profile image
donna01 in reply to AngelaBarron

I too had my gallbladder out and then was diagnosed with PBC a year later. I am on urso for the PBC, not for gallstones; My understanding is this is to help slow the progression of the illness down. It removes the "sledge" out of our livers. Strange though that my liver enzymes were all NORMAL prior to gallbladder removal. I had read online of a lot of people saying, "DO NOT GET GALLBLADDER REMOVED AS IT CAUSES LIVER PROBLEMS." Low and behold, here I am :(

MrsPearson profile image
MrsPearson

As you are sending me this message I am reading one of Rosemary Conley’s inch loss books.

I am joining the gym have already had a medical just physical part to go.

I still take my urso two in the morning and two at night, as per consultants instructions, apart from the first 3 months I’ve found this the best split for me, I suffered heartburn when I tried to take it all at night.

The dosage is by body weight, the optimum dosage is between 13/15mg of Urso to each Kg of weight. So I would do the sum, to make sure your getting the right dose if not I would question it with your doctors. It’s surprising how much your weight can fluctuate without it affecting the dose, but there may be good reason in your own case to be on a lower dose but I would find out for sure.

Just on the gallstone comments I still have my gallbladder, when diagnosed I never had any gall stones 5 years later ( and being on urso all that time) they dx me with small gallstones. Seems like it could be a chicken and egg scenario what comes first. I’am personally one who feels that any abdominal surgery is the key to the trigger of pbc not a spacific operation.

Jmorrison profile image
Jmorrison

Ive always taken 3 in morning and two at night.

SunnyXXOO profile image
SunnyXXOO in reply to Jmorrison

Nausea, vomiting, we loss, hair loss.

SunnyXXOO profile image
SunnyXXOO

Not able to take URSO, side effects horrific.

Bbbbbbbbbmmmm profile image
Bbbbbbbbbmmmm in reply to SunnyXXOO

That sounds horrid - What side effects did you experience?

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