Should I start URSO?

[Quirky1]

Hi there, I was diagnosed with PBC in 2010, following the birth of my first son. I had no symptoms except high LFT levels, which returned to normal about 8 months later. LFT's have then been consistently normal until birth of my second son in Nov 2014, where they spiked for about 3 months. LFT's have since returned to normal level again. Still no symptoms but my consultant now wants me to start taking URSO. After reading many posts on here about the horrible side-effects I am reluctant/scared to start taking it in case I feel worse! I think she said it was to prevent further damage to my liver but I don't want to be miserable with side-effects. Anybody else in a smilier situation? Thanks

[Sachin1234]

Urso is safe .. Very few people has sever side effects that they have to stop .. In the beginning u might fell little more fatigue and itchiness which will go down 30 to 60 days .

I'm not dr. So I can't judge ur dr. Decision .. What I heard from my dr in usa is as long as ur bili , albumin , liver enzyme are normal then it is not necessary to take urso .. Urso is prescribed for gallstone and other gallbladder problems too .. I would recommend u to have 2nd dr.opinion !

[Karaliz]

Hi Quirky1. With all due respect to everyone on this site, I feel this is a very important question best asked of a specialist or the PBC foundation who will give you time and expert advice if you ring them. Our opinions/experiences are valid but with regard to this significant question of the taking of Urso or not once a diagnosis of PBC is actually made, you need facts and advice from an expert.

All the very best

Karaliz

[butterflyEi]

I was placed on Urso some 9/10 years ago. I have not had any side effects, in fact my condition improved once starting Urso. Perhaps a telephone call or email to the PBC foundation will help you make a considered choice.

best wishes

[Hidden]

Hi

I would suggest that you follow your consultants advice and talk over with them any concerns you have , urso helps slow down the progression of Pbc so is beneficial.

However we are all individual and everyone will have there own experiences with side affects, I personally never had anything more than some indigestion which settled down after a while but I always space the tablets throughout the day and always take it with a meal. I know some people take them all together but i asked my Gastro she disagreed and preferred that I take them as separate doses.

[teddybear7]

I was put on urso immediately no delay. Apparently it is the only known thing thus far to slow down progression. I think you will find that those with side effects are actually in the minority. It is a very tolerant med. I have had non at all just make sure you always take it after food. Your Dr should be able to reasure you. Xxx

[Quirky1 in reply to teddybear7]

Thanks for your reply teddybear7, I am going to start taking it this week and will make sure i take with food, thanks for the advice.

[Hidden]

Hello Quirky1.

It seems to vary between diagnosed PBC patients and taking urso from what I have seen posted on here over the last few years.

I am in the UK and I know back in early 2010 when I started itching, and was found to have abnormal LFTs and an abnormal GGT followed by a 'high titre' (measure) of the AMA (antibodies) I was diagnosed (Dec 2010) and started on urso due to being considered symptomatic, that is with symptons of PBC.

Some with diagnosed PBC who are classed as asymptomatic (without symptons) and normal LFTs sometimes aren't started on urso at the time but monitored for any changes. I think it depends on who your doctor is and how you are actually fairing. You have already had what sounds like a short period of abnormal LFTs so that might be why. The thing is once we have PBC currently there is no cure and by taking urso it adds further bile to the digestive system which in turn helps break up fats mainly and causing less strain on the liver. I was said back in 2010 when I had a scan to have what appeared from bloods a 'slightly inflamed' liver but my scan was showing my liver and surrounding organs as well as the bile ducts to be pretty much normal.

I see urso as a supplement as opposed to a medication as such as after all we are simply adding a component of bile - the ursodeoxycholic acid - to our bodies. Apart from a bit of heartburn and bloating and also constipation when I started taking urso Dec 2010 I've been fine. My temporary side-effects vanished within the first 3 months. I have managed to deal with the constipation I never encountered pre-urso and the urso for my abnormal LFTs has slowly brought them down. In your case it might stop your LFTs becoming abnormal.

I've now been taking urso over 4yrs. Never was partial to wanting to take any medications pre-PBC but over time I have just got used to reaching for the

tablets twice daily as that is how I take them.

Here is another site if you want to request the free dvd on PBC. It's another UK site and you can read newsletters on it and I have found it does focus a lot on PBC.

livernorth.org.uk/

[Quirky1 in reply to Hidden]

Thanks for your reply peridot. I think some of my worries come from the fact that once I start the meds I will be on them for the rest of my life, but, like you say, I guess it's just something you get used to

[Hidden in reply to Quirky1]

Hello again Quirky1.

Me too, I loathe the fact that I will ahve to take the urso for life. I call it a supplement as opposed to a medication, always have. Due to the fact that we are taking a component of bile acid and adding to our system to aid better digestion.

For me I will be satisfied if I can continue a further 5yrs and then another 5yrs and so forth and just have to take the urso daily and nothing more. I went 5yrs of taking urso only in Dec 2014 so I've gone 5yrs with it now.

[Debbiem40]

Hi Quirky1. I am in the same boat as you, I have no symptons, haven't had for nearly 13 years and my condition was discovered after the birth of my son 13 years ago. I have recently started to take Urso, and was really reluctant for a long time, as I didn't want to be taking pills for the rest of my life and certainly didn't want to feel ill as a result, when I felt fine before hand!! Anyway, I have started to take them - when I remember - and I have been fine, absolutely no problems at all.

My son's friend was born with liver disease and he takes URSO twice a day and I think well if he can do it, then so can I!!!

Good luck x

[Quirky1 in reply to Debbiem40]

Hi Debbiem40, thanks for your reply :). It's good to hear that not everyone has horrible side effects and so there is hope for me also!! I have two young sons to think about so it would be silly of me not to take the medical advice I have been given, but still doesn't make it any less scary when I have never had to take proper medication before!! I am going to take the plunge this week so fingers crossed :). x

[Marishoo]

I've had pbc for 10 years, my chlorestral jumped up so they checked my liver and found the pbc

I went on urso 2 years in and every year they say all my levels are normal and I respond well to the Meds, they keep my liver normal and I have no side affects so yes I recommend them, that's the only Meds there is at the mo, you'll b fine.

[Hidden in reply to Marishoo]

I suppose it isn't surprising Marishoo to read that you had your cholesterol levels helped with taking urso as it was originally designed for dissolving cholesterol formed gallstones.

I was diagnosed with PBC when I had abnormal LFTs (liver function test) and abnormal GGT levels and started urso and 4yrs on from taking urso though my LFTs and GGT are still abnormal, they are not abnormally so at all. They are much much better than they were in 2010 the year I was diagnosed.

[Quirky1 in reply to Marishoo]

Thanks for your reply Marishoo, it's reassuring to hear that not everyone suffers side-effects. I will be starting them this week as it would be silly of me not to take the medical advice I have been given. Fingers crossed

[liver-bird]

Hi quirky, I take urso without any side effects. I think you shd ask the pbc foundation and if they agree with your consultant, then take it. You may have no side effects and it may protect your liver and keep you well enough to bring up your young family. Good luck and let us know how you get on

[Quirky1 in reply to liver-bird]

Thanks liver-bird, you are absolutely right, my main concern is being around for my two young sons so if that means taking the meds then so be it. It is re-assuring to hear that not everyone suffers side-effects though I plan to start the meds this week

[GrittyReads]

As others have said, I would talk to the PBC foundation.

I assume you also test positive for antimitochondrial antibodies (+ve AMAs). This is the other main diagnostic test, as well as abnormal LFTS for more than a 6 month period. People can have PBC without testing +ve for AMAs, but it is unusual, and they would often be offered a liver biopsy to confirm diagnosis.

If you have a printout of your actual lft results, that will help the PBC foundation people (link to their site, with advisors telephone number, at the top of this page), some chemicals indicate PBC more than others. You can ask for a copy of your results from your GP receptionist (it is your right to have a copy, but they may ask for a small charge for printing).

I hope you get some of this sorted asap. Meanwhile, look after yourself, do the things you enjoy and try to de-stress.

[Quirky1 in reply to GrittyReads]

Hi GrittyReads, thanks for your advice. The replies that I have had so far have made me feel a lot better about starting URSO. I went for a second opinion regarding the meds and they also said to start taking so I would be silly not to. Doesn't make it any less scary though!!! I am planning to start them this week.

[GrittyReads in reply to Quirky1]

Hi Quirky,

Have you actually talked it over with the PBC Foundation?

My main concern is that you have not yet said 'exactly' why you were diagnosed with PBC. I still think you need to talk it over with experts: okay your consultant - presumably a hepatologist - knows more than we do about the exact diagnostic criteria of your condition, and therefore presumably knows that you definitely do have PBC.

It's just that - for me - the details you have given us - on here - so far do not necessarily add up to PBC. But I'm not an expert.

Most of the replies above are assuming you do have PBC, hence the advice to take Urso, but so far - unless I've missed something in your posts - you have said that you don't have symptoms, and your lfts have only been temporarily abnormal, and following pregnancies, when I gather lfts can go askew. You have not mentioned AMAs.

Strictly, formally: for a diagnosis of PBC you need 2 out of 3 diagnostic criteria to be present.

1) the presence of antimitochondrial antibodies (+ve AMAs): and /or:

2) abnormal liver function tests over a period of six months: and/or:

3) a liver biopsy showing damage to the bile ducts, typical of PBC.

It's usual for people to be diagnosed if they have 1 and 2; sometimes they are diagnosed with 1 alone, if there are symptoms of PBC (mainly fatigue and itching, though there are others). With 2 alone, other conditions do need to be ruled out, and the lfts closely monitored. Often, if 1 or 2 are absent, but there is concern, a biopsy is given.

I'm not advising you not to take urso, or to take it.

I just feel that you have not actually told us enough for any of us to advise in any way (unless, as I've said, I've missed some vital detail in my quick reread of your initial post and your replies), and I want to stress that you do need to know that you have been fully diagnosed with PBC, and why.

I feel awkward saying this, but I would still talk to the PBC Foundation (there is a link to their website at the top of this page: the website gives both phone numbers and an email address to contact their advisors).

Take care.

[Jojowen]

Hi, I also take urso - no side effects for me, feel better now than before. I think urso can be tried and then dropped if they make you feel worse. I agree this should be discussed with specialist but my experience is they don't always know...sometimes you get to try and see what happens. If you can tolerate them well and they improve your bloods then it is all good.

Good luck!

J

[gizocsi]

I also take URSO without any side effects, by the way, those, what others discribe, are much less troubling, then some antibiotics taken for some infections. It's the only thing, medicine can offer us, and though this is not a quick sickness, it works, the speed is different at different patients and simply in time. You have kids, think it over. My lfts are much better then for 12 years, when they haven't been knowing -- what a nice construction, does it work here?-- (didn't look well for) why. Take care of You, it's not that bad!

[janice-k]

Don't take Urso. Xx go get 2nd opinion but be well. You don't need Urso. Xx

[cazz22]

Hi.if you have a problem with urso(I cannot tolerate the capsules) try tablets or even suspension.i only take 450 mg daily as more doesn't suite but my bloods are a whisker away from normal.pbc foundation said it was better to take a little rather than none as did my specialist.i wish you well

[Quirky1 in reply to cazz22]

Thanks cazz22 I have started them today, just one dose at the moment. Never really thought about what form to take it in so will consider this if things don't go so well.