Advice required please: Hi, hoping someone... - PBC Foundation

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Advice required please

Cascade35 profile image
12 Replies

Hi, hoping someone here can help/advise.

I was diagnosed with PBC 18 months ago and thankfully I have responded to Urso Acid.

From the start I was on Ursofalk but this month the prescription I have just collected is Cholurso.

Are they all the same and it’s just a generic name from a manufacturer? Should I stay on the exact same brand that I’ve been on or is it okay to switch if that’s what’s currently available?

Can’t speak to my Dr or PBC specialist and the pharmacist literally said that’s all that’s available.

Please help as just need advice and reassurance.

Thank you

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Cascade35 profile image
Cascade35
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12 Replies
DonnaBoll profile image
DonnaBollAdministrator

I know how scary it is when you are responding to Urso and suddenly you get a different named drug. From what I 've read Cholurso is another name for Urso. There are many manufacturers of 'Urso'... often it is the fillers what they use that makes someone not able to tolerate one brand over another. Unfortunately, you won't know unless you try. I would hope you get labs done 2-3 months after starting the different brand drug. So glad you have had good results with Urso.

Cascade35 profile image
Cascade35 in reply to DonnaBoll

Thank you Donna, much appreciated. I just felt the first brand was problem free and was just worried switching pills to a different one could change things for me.

DonnaBoll profile image
DonnaBollAdministrator in reply to Cascade35

How often do you get your liver enzymes checked? Interested to see if there is any change at all... but we all have fluctuations.

Cascade35 profile image
Cascade35 in reply to DonnaBoll

I was diagnosed in January 2023 and had monthly blood tests for the first 8 months. Then every 3 months, now 6 monthly. Next bloods in late November so it will be interesting to see if a change of Urso acid has made any difference to my numbers

Fergusonm2 profile image
Fergusonm2

Hi Cascade, I’ve been on Cholurso since diagnosed 6 years ago and have had no problems. They tried to change it once and I refused to take anything else because it may have different fillers. Hopefully you’ll be fine . I’m terrified of the stock shortages that are happening

Cascade35 profile image
Cascade35 in reply to Fergusonm2

I know exactly what you mean. If you take a certain one consistently and have no problems with it and then it’s randomly changed, you don’t know exactly what is in the new one. Also with the shortages, something is better than nothing and I’ve heard some patients have gone 3 months with no Urso

Waterbabe3174 profile image
Waterbabe3174

I was on Ursofalk from 2015 and changed to Ursonorm about six months ago after our local pharmacy was taken over. I queried this and was told “they’re all the same”. Happily no adverse effects and numbers have remained stable. Hopefully you will be the same.

Cascade35 profile image
Cascade35 in reply to Waterbabe3174

Thank you. I won’t know until December when I do blood tests if the change has made any difference to my results

Waterbabe3174 profile image
Waterbabe3174 in reply to Cascade35

🤞

Candy12 profile image
Candy12

I’d taken the Branded Ursofalk, for many years then all of a sudden the pharmacy started giving me generics sometimes two different ones in the same prescription.

Taking any of the generics about 3 years in total never had any impact on my blood markers, however I was quickly aware that some of them gave me side effect tummy issues.

Long story , with giving them back and battling with the GP to get Ursofalk. I went and had a word with Boots pharmacy who I used to use when they had a branch near me, but like a lot of places they closed that branch.

They told me they only dispense Ursofalk so I changed my chemist back over to them and I’ve had Ursofalk again ever since. It now means a drive to pick up my prescription but at least I avoid the tummy issues.

Wocket profile image
Wocket

I always get Ursofalk because the generic ones I was given made me sick. Generic ones are fine to use if you don’t get side effects from the fillers. Most people are fine so I wouldn’t worry.

Readlots profile image
Readlots

I get all sorts, whatever is available and have never had any problems. Fingers crossed you’ll be fine

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