Horrible dilemma update!

[MissusTee]

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!!

[chynablue]

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

[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]

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

PBC Foundation can we please have a comment on this!

[MissusTee in reply to butterflyEi]

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

[mardot in reply to MissusTee]

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 However, this has long been replaced by artificially laboratory manufactured ursodeoxycholic acid.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 in reply to butterflyEi]

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 in reply to badpiglet]

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

[badpiglet in reply to MissusTee]

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 in reply to badpiglet]

Thank you!

[jiacheetah in reply to MissusTee]

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

[Twinkle26 in reply to MissusTee]

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 Partner]

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 in reply to PBCRobert]

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 in reply to MissusTee]

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 in reply to CathieG]

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

[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 in reply to Louedwards]

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 in reply to Louedwards]

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

Bile acid is chemically based!!

[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 in reply to Louedwards]

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]

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]

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]

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.