Horrible dilemma

[MissusTee]

I,ve been prescribed urso, but haven't started it. I emailed the manufacturer to ask them exactly where they sourced it from, as i,m a strict vegan. The answer was is that they source it from cattle from the slaughter house. If i decide not to take it, does anyone know of alternatives, or what the result would be? Thanks

[Hidden]

Hello MissusTee.

I dont' know who your manufacturer is of your urso and can well understand your concern regarding taking it if you are a strict vegan.

But at the end of the day I don't think you are going to get anything different regarding the urso and I don't think there are any alternatives about as yet. 

I've always been a supporter of cruelty-free myself ( really cannot see the point in testing things like cosmetics for instance on an animal and I do think that using an animal to even test medications on is questionable due to animals having a completely different genetic make-up) and it is a very complex subject if you really look into it.

I do think that having PBC unfortunately you have to put certain things aside and resolve certain issues with yourself.

A lot of medications are the result of animal by-products.  Even vaccines can be too.

I think it depends on how you are at present with the PBC.  I think if you have been prescribed urso your doctor thinks you need to take it daily.  My liver function test (LFTs) and GGT were over the normal range pre-diagnosis in 2010 and over time they have come down and I have to say that the urso has made some difference even if not having blood work to a normal level 5 years on.  My itch has altered over time and I very much doubt it would have had I not had the the urso.

I cannot say how anyone would fair without the urso as with PBC it seems that anything goes.  For some of us without urso and normal bloods it might continue to remain that way, others it might not.  I believe that even for some of us who start taking urso our bloods might never have continued on the rise (I know looking at my results a few months prior to diagnosis they had actually dropped naturally) but it is something we don't really know.

The only other suggestion is to find manufacturers of the urso in your mgs (I take 600mgs daily so seems I have slightly less limitations to manufacturers.  Some take multiples of 250mgs and the common one in the UK where I am seems to be Ursofalk), contact them and see if you can get a different answer.  If so then you could chat with your doctor if you then feel you've found what urso might be best.

[MissusTee in reply to Hidden]

Thank you. I have an appointment with the Hepatologists on the 1st June in Leeds, so i think i will have a chat with them about it. I can't see my friends and family being too happy with me if i don't take it, but it really does not sit well with me either. I,ve stopped drinking alcohol but because i have several autoimmune conditions, am finding it all a little overwhelming!!

[CathieG in reply to MissusTee]

Hi,

I'm vegetarian and honestly thought that Urso would be made up in a lab from chemicals! How nieve!  I am on 1000mg a day and know that if I stop, my liver would never cope. So, I'm thinking that people do eat meat, animals are killed to feed people and not just killed for sport and fun by some crazy folk. Please let us know how you get on at your appointment in Leeds. I attend that clinic and am due to go later on in June.

[emerich]

Hi MissusTee

I was found to have pbc in 2014 and started on Urso. However I had a severe allergic reaction to it and had to stop. Specialist believes I've had pbc for approx 7 years now but luckily I have no symptoms really. The main problem at the moment is I am unable to take statins prescribed after I had a heart attack early 2014, because of the damage done to my liver. I understand your feelings on ethics but only you can decide whats more important to you. Personally I would be using anything available to keep my health and keep me here for my family, and as peridot says animals are used in testing for many things. There are no alternatives at the moment for pbc, also no alternatives for cholesterol that are as effective as statins but I would jump at the chance of new treatments if they were available. I am against animal cruelty of course, and would always opt for non animal testing if it was possible, but sadly when it comes down to it, some things are more important to me. 

[teddybear7]

There are different brands of urso I was under the impression that most are now chemically made in a lab. So it's worth doing a bit of research. Urso slows progression so not taking it could mean you progress quicker. There's development in to alternatives but nothing out there yet but trials going on in America. Whilst I can understand your opposition. Animals are not being hurt specifically for urso, they are not being bred or hurt just to extract the bile it's just a by product of something else that's happening, you not taking it will not change things unfortunately, but it may change you & your life span. Is it worth the risk? Only you can answer that honey. Xx

[exy21]

As above there is different ones. I could only tolerate the non-generic one so my script was very specific for it. Have a chat with your hep. 

[MissusTee]

Thank you for all your replies. I will chat with the hepatologists, but the pharmacist did say that they weren't sure either, so that's why i emailed the manufacturer. I,m really into animal rights and i felt that as urso was a bile acid then, 'where  the heck do they get it from'? I wish things were more transparent, rather than just taking tablets with no idea where it comes from!

[badpiglet]

When I tried to look into how URSO was manufactured, the common method seemed to be synthetic procedures from a source material, most commonly cattle/ox bile, which is got as slaughterhouse waste and then chemically processed.

I think that there has been research into purely chemical synthesis, without the need for ox/cattle organic starter and I seem to remember reading something last summer that someone had managed to do it successfully and economically but I can't for the life of me remember where I read it.  China?

If they have managed to synthesize it, I'm sure due to significant demand, a purely synthetic form will be manufactured as soon as they possibly can - if it isn't already.

If you look up all the different names URSO is marketed under, you should be able to fairly easily find out where they're all made.  I came across this strange site:

drturumin.com/en/Ursodiol_e...

I certainly have doubts about some of the site's content, however the above link does show a list of some manufacturers.  No idea how out of date this list is - no date is specified.

I'm not vegan but can totally understand the need to know what exactly you are being asked to swallow, where and how it is made. 

[chynablue in reply to badpiglet]

Hi badpiglet,

I read a similar article: jcm.co.uk/news/asiatic-blac... 

It seems that ursodeoxycholic acid was originally sourced from Asian bears.  The bears were victims of animal cruelty, and people spoke out about it.  Manufacturers have switched to sourcing bile acids from ox bile gathered from slaughterhouses.  They use this bile acid as a starting point to synthetically produce ursodeoxycholic acid. 

Animals Asia is a group that advocates for animal rights, especially ending bear bile farms.  As recently as 2014 they said "We note that synthetic bear bile is also still an animal product – albeit a byproduct of a wider industry. It remains an ethical dilemma and the debate surrounding the use of all animal products continues and remains entirely worthwhile. From the point of view of ending bear bile farming, and drastically reducing suffering of animals caged and mutilated for anything up to 30 years of their lives, this is a huge step. In the meantime, the battle to improve the lives of all animals, including those suffering under intensive farming conditions, goes on.

"

The article animalsasia.org/us/media/ne... makes it sound like urso made from no animal products at all is still a work in progress.

Back in 2006, Professor Clifford J. Steer MD, University of Minnesota Medical School was quoted as saying that "it is now possible to analyse in detail the constituents of bear bile and reproduce the extract by purchasing the different bile acids from commercial vendors, and indeed to synthesize the different bile acids in the laboratory without using any animal tissue at all, and at a fraction of the price." file:///C:/Users/jyandell/Downloads/JCM82_49.pdf

So, I found his bio: stemcell.umn.edu/bio/stem-c... He seems pretty legit, and was named Fellow of American Association for the Study of Liver Diseases in 2014.  His research interest areas include Ursodeoxycholic acid.  If anyone would be up to date on Urso availability and research, it would probably be him.

I emailed him to see if he knew if non-animal UDCA was available yet.  We'll see if he responds.  He's probably really busy, though, being a research professor.

Hey MissusTee, even if you have to compromise your strict vegan values in order to take Urso, you are doing the right thing by bringing awareness to animal advocacy issues.  I would have never looked into these issues if you had not asked the question!  Please keep yourself alive and well so that you can continue setting a good example for us all, even if that means taking a non-vegan medication that has no cruelty-free alternatives.  

[chynablue in reply to chynablue]

Sorry, that one file link didn't work as expected.

If you google "a bitter pill journal of chinese medicine", a link pops up so that you can download the article in pdf format. 

[badpiglet in reply to chynablue]

Hi chynablue,

Let us know if you hear from your Professor.

It seems to be necessary to research every brand offered. Sometimes 2 or 3 chemical production plants are involved in one product, not necessarily in the same country. Some companies 'finish' by turning a base chemical into the final completed form. It is a complicated subject and a convoluted trail.

Until purely synthetic production is cheap enough let alone tested enough, production using waste bovine/ovine bile as a starter has a place as a cruelty free option.

It is an extremely sensitive subject. Let's just hope that completely synthetic production of URSO and its alternatives, becomes cheap enough and widespread enough worldwide to end the cruelty in some countries for good. I think the the World Society for the Protection of Animals worldanimalprotection.org has long been campaigning against the farming.

[MissusTee in reply to badpiglet]

I hope so, pharmaceutical companies aren't renowned for their ethics, and i also dislike the confusion and worry that this causes on top of every thing else!

[Becca75]

well URSO slows down the progression of the disease. My specialist said at the moment URSO is the only medication out there for PBC. They are testing a new med I read - but when that will be approved (as it requires a lot of testing) I don't know.

I don't know of anything else that will slow it's progression. My dr. even told me there was nothing else I could do (lifestyle wise) to help. I already don't drink or smoke or anything.

I guess if you don't take it then you need to accept that it will progress. Do you know what stage you're in now?

[MissusTee in reply to Becca75]

No, i have no idea!

[Karaliz in reply to Becca75]

Hi Becca75. With regard to your statement about the new med, I believe you are probably referring to  Obeticholic Acid. I am part of this trial (4th year) as I became a non responder to Urso after 7 years and my LFTS deteriorated dramatically. OCA is the new weapon and is being fast tracked in the USA. I am in Australia and although there is no definite date for its commercial release, I believe it could be within a year. So hope and help is at hand for all of us who fall into the non responder group!

Cheers

Karaliz

[Becca75 in reply to Karaliz]

oh ok - I didn't know the name of it - I just know there is another one that is being tested. I'm in Canada so I'm not sure when it will get approved for here - I just hope it has enough testing first though

i'll find out at my next apt in june if I'm responding well to URSO I guess

[Becca75]

a liver biopsy would stage you...so when you get to that point where they want to do a biopsy (if they do) you'll know what stage you're at.

[highwood]

I cannot tolerate Urso, have tried so many different types of it but no good for me. Have been off it for about 18mths. Had two bouts of infection in bile ducts, have one at the moment.  GastronConsultant put me on extra strong antibiotics, worked first time but not working this time. Having MRI Next Tuesday. I am in remission from GCA/PMR second time in remission of these awful autoimmune desease's. I had to take large dose of steroids came off last July. I also suffer with steroid induced diabetes type 2. Do not know what stage I am with PBC and do not want to know. Sending lots of gentle hugs and prayers to each and everyone of you on this forum. 

[MissusTee in reply to highwood]

Sorry to hear that you're so unwell. I have 4 autoimmune conditions including this one, and am off work due to abdominal pain and weight loss. On top of this i will only get paid SSP as from next week, just adding to my worries.

[highwood in reply to MissusTee]

I am retired. Really feel for you money worries are so stressful. I really feel for those that have trouble affording their prescriptions. Got to say all my problems started when I gave up smoking. Told GP they should put a warning on packets (giving up smoking can really damage your health lol) she said only I would think of that lol. Hope you feel better soon Missus Tee x

[MissusTee in reply to highwood]

Thank you. Those needing multiple prescriptions can join the monthly payment for all their prescriptions for a small fee, the forms are at the pharmacy or online  nhsbsa.nhs.uk/1127.aspx

[highwood in reply to MissusTee]

But those in the USA pay horrendous prices for Urso, even with insurance 

[MissusTee in reply to highwood]

Yep they do, but as a UK citizen i can only go by what's on offer here!

[donna01 in reply to highwood]

That is not true. If you have insurance, it is very affordable. I am no longer on the urso however my insurance covered a 90 day supply for only 30 dollars.

[highwood in reply to donna01]

Not always according to some of the posts I have read. Some people really struggle.

[Hidden]

From understanding Ursodeoxycholic Acid is synthetic, here is a link to a 'patent' sight which was published 2012. I'm sure there are other sites that also state that Urso is a synthetic substance.

google.com.au/patents/US201...

[MissusTee in reply to Hidden]

Well i emailed the manufacturer directly, and they were quite clear that they manufacturer it from slaughtered cattle. The contact details are on the leaflet inside the medication.

[Hidden in reply to MissusTee]

What's the email address? I'd be interested in contacting them about that

[MissusTee in reply to Hidden]

I emailed [e-mail]  it will be on the info leaflet inside the meds

[Hidden in reply to MissusTee]

Thanks, I'll look into it. The medication leaflet for Ursofalk (the bile acid capsules) I take state that it is a synthetic bile acid, so I'm not sure which brand you are talking about. If the brand you are using is made of animal products I would suggest changing your brand.

[MissusTee in reply to Hidden]

That's what they've given me. It may well be synthetically manufactured from slaughtered cattle.

[Hidden]

No, MissusTee, there is no animal matter in synthetically manufactured products. Dictionary definition of 'synthetic' is as follows: (of a substance) made by chemical synthesis, especially to imitate a natural product."synthetic rubber"

[MissusTee in reply to Hidden]

Well i,m going to go by what the manufacturer has told me as they emailed me directly. What the dictionary says is of no interest to me, what they say is!

[Hidden in reply to MissusTee]

Your prerogative.

[MissusTee in reply to Hidden]

Yep, its my thread!

[Jin-Qian]

Gallbladder problems run in my family. In my research, I've read about an herb in traditionalChinese medicine called Jin Qian Cao or gold coin grass or Lysimachiae christinae which is made into a tea. In the United States I was able to order some dried from a company called activeHerb in San Diego. I also saw a study that said women were less likely to get symptomatic gallstones the more vitamin C they got, either from diet or supplements. I have also heard of taking a taurine supplement. I do all three, but only make the tea about once a week because I don't want to develop an alergy or sensitivity to it, and I take the taurine in a dose much smaller than the recommended dose and take it with half a zinc pill because it also supposedly helps zinc absorption, and sometimes my diet is low in zinc. I also take a docosahexaenoic acid (DHA) oil made from algae. I limit my fat and protein intake so as not to overwork my digestive system. (I use the recipe calculator tool on myfooddata website to type in my foods for a day to see that I get enough protein without too much. I try to keep my fat intake low, maybe 30 to 50g a day outside of the algae oil. I can tell right away that I get indigestion if I go over.) I also supplement with betaine anhydrous (1/2 tsp in the morning in a small amount of water, consumed right away after adding to the water). In the evening I take a teaspoon of soy lecithin.

B vitamins are supposed to help support a healthy gallbladder. When I started having indigestion it was a time when I had fallen out of the habit of taking any vitamins. Now I take a b complex that comes in a capsule. But instead of swallowing the capsule I tap a small amount out into a spoon to swallow. (It tastes bad but I'd rather not swallow a pill)

Some light exercise seems to help, too. Just getting your steps in, if you use a pedometer. I don't have one but try to walk a bit outside each day. My exercise tolerance isn't the best but we all do what we can.

Someone once pointed out to me that your liver, pancreas, and gallbladder all rely on each other, so if one is not doing well it puts stress on the other organs, too.