Horrible dilemma update!: So, i saw the... - PBC Foundation

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Horrible dilemma update!

MissusTee profile image
23 Replies

So, i saw the Hepatologist at St James in Leeds. I,m glad that i asked for a hepatology referral, as i was finding that gastroenterologists were not so specialised. I had a fibroscan -only took 1 minute! This showed stage 1 fibrosis, and the doctor said that my LFT's have come down a little now, so i don't have to start urso, which i,m very pleased about as he has confirmed that there is NO alternative for its source other then from harvesting it from dead animals. I have it in writing too. So some information for those of you that wanted to know, and no disputes please, think that the manufacturers and hepatology consultants know their stuff. Good news for me though.....at least for the time being!!

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MissusTee profile image
MissusTee
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23 Replies
chynablue profile image
chynablue

Glad to hear you are doing well! I needed some good news today :)

Goldsworthyhelen profile image
Goldsworthyhelen

im glad you had goid news. I had no idea where Urso came from can't say I'm keen on the source but my bloods have come down taking it so it's a catch 22 situation.

butterflyEi profile image
butterflyEi

NO I do not believe that URSO is harvested from dead animals!

PBC Foundation can we please have a comment on this!

MissusTee profile image
MissusTee in reply tobutterflyEi

Why don't people believe me?!!! The MANUFACTURER and a heptaology consultant have verified it to me both in writing!

mardot profile image
mardot in reply toMissusTee

According to my original GI specialist, Urso (meaning bear) was first developed using bear bile. However, this has long been replaced by artificially laboratory manufactured ursodeoxycholic acid. Like everyone, I was not keen to accept any product from animal experiments.

cheers, Dorothy

badpiglet profile image
badpiglet in reply tobutterflyEi

Hi ButterflyEi

Did you read MissusTee's recent previous post on the subject, as it might help?

It seems there is much misunderstanding over the terms synthetic and chemical. Those terms do NOT mean that all the chemicals used in a medicine's production have been created purely from scratch in a laboratory.

Harvesting from dead animals is possibly a phrase that is emotive and would make most shudder (sorry, MissusTee!). But source acids ARE extracted from bovine and ovine bile, which is obtained as a readily available byproduct from slaughterhouse/butchery waste. It is recycling - if it wasn't used, it would be destroyed.

Here are links to just 2 of the many manufacturers;

marenis-pharma.com/pages/ur...

nzp.co.nz/cholic-acid

This is a direct quote from the Marenis site:

'Today Ursodeoxycholic Acid is rather produced in multi-stage synthetic procedures on an industrial scale. The source material used is ox bile, which is gathered as slaughterhouse waste and treated for later chemical processing.'

MissusTee profile image
MissusTee in reply tobadpiglet

Thank you for your support. I,m in tears and about to come off this site, for merely passing info onwards x

badpiglet profile image
badpiglet in reply toMissusTee

Hey - big, big hug & dry your tears!

It's an incredibly touchy subject (you may not have realised just how touchy!), even if you try to tip-toe around the issue, people will get upset.

Maybe the stress of thinking about where your life-line medicine is sourced from, on top of the huge stress of being ill, coping with life and family issues, is one stress too many.

Anyone can google the manufacturers and in turn follow the links back to find the ingredient 'chemical' manufacturers (which may well be in a different country) - in an hour on the internet you can find out an awful lot of information - but many people don't want to know too much detail. I think that it's very much a personal choice about what you can cope with and it's not right or wrong if you choose not to want to know too much. It's just the way it is.

Also remember we all come from very different backgrounds with huge differences in knowledge and experience of science, chemicals, farming, manufacturing.

But even Robert has (possibly!) misunderstood the word synthetic ......

Keep smiling MissusTee :)

MissusTee profile image
MissusTee in reply tobadpiglet

Thank you! :)

jiacheetah profile image
jiacheetah in reply toMissusTee

We all have an opinion. People will read what you post and say what they want. It's all good. Stay well.

Twinkle26 profile image
Twinkle26 in reply toMissusTee

Don't let this issue stop you from this site, there are lots of things people feel strongly about and you would be doing the same to support your beliefs too, it's not nice knowing where it comes from and animal or not it's the only thing at the moment prolonging people's life's.

PBCRobert profile image
PBCRobertPartner

Hi MissusTee,

I don't know who your consultant is or which manufacturer you wrote to but I'd be interested to see your information.

We have a good working relationship with some (not all) pharma companies who produce bile acids which help PBC. Our understanding is that it is synthetic but obviously, of that is not the case we would be interested to know.

Yours,

Robert.

MissusTee profile image
MissusTee in reply toPBCRobert

Yep, i wrote to the ursofalk (well emailed) manufacturer's on the information inside the ursofalk information leaflet (the one inside the medication packet) and my Consultant is Dr Jones, Hepatology consultant, St James Hospital, Leeds (recommended by yourselves!) The consultant's words are: "as it happens you are a vegan and pointed out that it is sourced from the bile of cattle including cows and oxen. I have checked with the drug companies and you are correct that is the source of Ursodeoxycholic acid and there is no other source."

CathieG profile image
CathieG in reply toMissusTee

Hi, I'm vegetarian and wanted to know where the bile comes from. Told it comes from cows. Probably comes from different animals but I'm grateful that my life is being extended wherever it comes from. The fact that people eat meat doesn't bother me, it's their bodies not mine. I don't agree with senseless killing of animals for sport etc but the fact that my bile is coming from an animal that's not harvested for sport is ok with me.

My consultant is also Dr Jones at Leeds.

MissusTee profile image
MissusTee in reply toCathieG

I,m not telling anyone what to do, just providing the info.

Louedwards profile image
Louedwards

So afterafter reading this i decided to look this up. At no point have i found it mentioned that this comes from animals. It states its chemical based.

MissusTee profile image
MissusTee in reply toLouedwards

You must know better than the manufacturer that i had contact with, and my consultant then. Urso is chemical based, its a bile acid, its where its sourced from that's the issue!!

MissusTee profile image
MissusTee in reply toLouedwards

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

Bile acid is chemically based!!

Louedwards profile image
Louedwards

Well im not a vegan and its helping me so where ever its sourced from i shall still be taking it. I still do not believe this to be honest.

MissusTee profile image
MissusTee in reply toLouedwards

I,m not telling anyone what to do, i am merely sharing the information that i have been provided with. Where did i tell anyone what to do? I thought it would be of interest, as this is what this 'support' group is for isn't it? I,m glad that its helping you, and one day i may be in a situation where i have no option either. Why don't you email the manufacturer and get your own answer!?

Louedwards profile image
Louedwards

Well like ive stated at rge monent its wieking for me. And as its the inly real way of helping PBC i will carry on taking it. Where ever it is sourced from. I wish to live a long and healthiest life as possible. Im going nowhere yet. My time isnt over. 😊

Sammie7 profile image
Sammie7

Why are you scaremongering, it is the only treatment that can be prescribed at the moment that works. You are very lucky that you do not need to take it???? When your alp and ggt are really high I think you might change your mind.

badpiglet profile image
badpiglet

Personally, I'd like to apologise if there's anything I've posted that caused upset, distress or offence. It is sometimes too easy to be insensitive to other's feelings and fears. I don't think scaremongering was the intention by anyone who has posted. Genuinely very sorry.

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