PBC diagnoised yesterday started my URSO today should i be worried about possible side effects

[lizzylou]

[mumofthree]

I was diagnosed in Jan 2011 and like you started on URSO immediately. Only problem I had within the first few weeks was very loose motions...but my consultant did warn me that that may happen. I was prescribed 2 URSO capsules 3 times a day but he told me that if I did get the runs..to drop them back to 1 capsule 3 times a day and build them up gradually over the next few weeks...this I did and have been fine since. Weight loss/weight gain also seems to be a side effect..unfortunately for me I have gained weight...over a stone since taking URSO... its definitely not from what I eat.

Don'y worry too much, you'll be fine.

Take care of yourself

[sistergoldenhair]

I have been taking Urso since it came out and replaced Actigall. I have never had any noticeable side effects and I take 1250 mg daily(5 pills).

[Junolee]

I take 1500mg daily 3 x twice. On steroids too, being weaned off. Nothing major. Haven't gained one ounce! Just watch what you eat and try and get a walk in a day if you don't have tiredness. I had problems sleeping before but try to get to bed by 11, I fall asleep the minute I close my eyes and wide awake refreshed in 5 hours :). Gave up wine when diagnosed and sometimes think that rather than all the meds has me feeling so much better. Try eat healthy an be positive. Enjoy every day.

[Val02]

I had no side effects on taking URSO at all.

[Hidden]

I was allergic to the capsule covering.... Gave me hives. On tablets now, no problems at all.

Good luck

Lou

[Oidra]

I have taken Urso for 12 years ( 3 capsules in the morning otherwise I forget) with no side effects and no weight gain. I go to Boots to get the URSOFALK brand as I thought a different brand from another chemist was not as suitable or that could have been how I was feeling at the time - difficult to be sure but I feel happier sticking to that brand.

[Hidden]

Hello lizzielou.

I started on urso Dec 2010 and the only side-effects I had at the start was heartburn and a bit of tummy bloating which I never had prior to starting on urso. I was a bit sceptical as never been one for taking medications unless absolutely deemed necessary but decided to take as came and see what blood tests kept showing up to really know.

Well it was a few mths before the heartburn ceased along with the bloated tummy at times. Originally I was taking the urso (on 2 x 300mgs a day) one at morning with breakfast and then I'd have a snack and take the last one about 9p.m. The results started to come back looking good so I continued but I was hopeful the itch would start to get better.

That has taken a considerable amount of time to settle down (nowadays I can go many nights without (only itch at night) and then go thru several with. Not sure if it is due to the urso there.

Because I have been prescribed 600mgs per day as it goes by body weight, it appears the only one I can have is URDOX but I have recently questioned my latest prescription as it appears the URDOX is no longer on the box and it just says in small letters, 'ursodeoxycholic acid'. I think I now have a generic brand and when I started these it was 2wks in I felt sort of different but in the last wk can't say I feel any different anymore, just like I've been since the initial side-effects vanished during 2011.

I think with being diagnosed PBC you can feel in some sort of Catch 22 situation as we are told that is basically the only med that can be given with the explanation it 'can help slow down progression of PBC' but I do question myself if it would be possible to fair just the same without if you know you now have PBC? For me as long as the bloods are showing pretty much ok tho' expected to be within some abnormal range in PBC I'll certainly continue for now taking them as you never know, for me and a great deal of us it could well be the lifeline in the long run.

[SC49]

This isn't a side effect - more a side benefit and it might well be a coincidence.

Before starting on Ursofalk, I was taking Nexium for really bad stomach pain after eating. The Nexium didn't always help. Since starting the Ursofalk though, I've had no pain. I stopped talking the Nexium - and still no pain. i am delighted because eating has become more of a pleasure than a pain

[milo2002]

no worries

[PBCRobert Partner]

URSO, or UCDA (which stands for Ursodeoxucolic Acid), is the only treatment for PBC.

It is designed to flush the bile from the liver. By doing this, it slows down any build up of bile (which is, after all, how PBC progresses). By slowing down any bile build up, and by flushing out any previous stock of bile, it allows the liver to work more efficiently. Thus, many peole experience lowering of LFTs (or bloodcounts).

A word to the wise: Urso is designed to flush bile out of the system. It only has one mechanism to do this and that is through the bowel. So, if there has been a build up of bile, it's not unusual for the "runs" to occur. After all, it is doing what it is meant to do. As the urso flushes out the back stock of bile, this will lessen.

Urso is a lifelong treatment for PBC. After all, once it starts working, it continues to flush bile from the system as much as possible. Urso hasn't been clinically trialled for PBC over the long term and it never will be. The weight of evidence that Urso helps PBC is now undeniable. Urso is now the "standard care" for those affetced by PBC. That means it is what generally should be prescribed by medics at time of diagnosis. That has been agreed UK wide by top researchers, hepatologists and gastros in the county's leading hospitals.

So, to have a 25 year study where one group is not given Urso would be ethically dubious, at best. So, it will not happen. However, we are aware that longevity with PBC has greatly improved.

As an aside, it doesn't seem to matter when you take the Urso: 4 tablets spaced out through the day is no different to 4 tablets once a day. The prescription should be round about 13 mg of Urso per Kg of person so please do check with your medics that you are on the correct dosage.

Whilst Urso is not designed to alleviate symptoms, for a lucky few it seems to help with the itch. The itch is thought to be due to naturally ocurring opiates in the body not being processed by the liver and being released back into the bloodstream. (This is why the itch is said to be under the skin, not on it). However, we know Urso flushes out the bile; we know that allows the liver to work more efficiently (as shown by lower LFTs); so, if the liver is working more efficiently, a coincidence of this (for some) is that the opiates are beng processed better by the liver.

Some people with PBC gain weight with Urso, some lose it, some stay the same. We don't understand the hows or the whys on this one, I am afraid.

Yours,

Robert.

[SC49 in reply to PBCRobert]

Hi Robert.. I am interested in your comments that ''it doesn't seem to matter when you take the Urso: 4 tablets spaced out through the day is no different to 4 tablets once a day'' and they recommend that it's 13mg per kg of weight.

First, I've had it prescribed to be taken 3 times a day around meal times. Would there be a reason for prescribing that way?

Second, I've been prescribed 750 mg per day. Using your calculation, it should be about 1030 mg per day. Do they introduce it gradually and work up to the optimum dose or do I need to speak to the doc again?

[Hidden in reply to PBCRobert]

That is really informative thank you

[Hidden]

Hello.

I too just had to 'stick my two penorth' in now!

I originally got urso in Dec 2010 and it just stated to take '2 a day' on the packets of which I was prescribed at 10mgs per kilo of body weight by the hospital gastro.

Back in Dec 2010 I started to take one at morning with breakfast and then the final one at night with a snack around 9p.m. I started to suffer heartburn for a few mths and did wonder if I should alter when I took the urso so started taking one with breakfast and then one with my evening meal around 5p.m. to 6.30pm-ish. I found that alleviated heartburn as it no longer exists.

For me my LFTs are pretty much stable after almost 2yrs of being on urso and as I see it as I do now, I think urso should be taken with food and around a meal as the chemical bile will surely be required for part of the digestion process on eating.

I recently picked up another script for urso and noticed the pack has changed slightly, the working of URDOX is no longer on the box, small letters 'ursodeoxycholic acid' but the orig makers' name (Wockhard) is still there. I also noticed the wording for how to take the tablets has now changed, it states, "Take one twice a day with or just after food".

Apparently SC49 you are started on urso and then monitored to find out how you are doing. I can't say if the urso is upped but have read previously on here that some patients do get higher dosage. I did once read some report but can't say where now about testing urso several yrs ago and the fact that to up the dose to a certain level, it was of no advantage. I have read on the actual manufacturers site for my particular tablets and it mentions overdosage and also the fact that if too much urso is taken in it will just be excreted via faeces but these instructions we have to note are for patients who have been prescribed urso for PBC (or dissolving gallstones).

[SC49 in reply to Hidden]

Thanks Peridot. I'm back at the docs later this week so I will check with him about whether i need the the dos or not age increased. I have nearly driven myself insane trying to remember to take the tabs - if I could take them just once a day it might save what's left of my marbles. The only thing that would concern me about taking them all together is that I find them very hard to swallow. It could take me the whole morning to get them all down!

I didn't get a drug information leaflet with the medication and for some reason, it never occurred to me to look on line (i usually google everything!) I'm still hoping for the miracle that will get rid of the tiredness.

Thanks again

[Hidden]

Hello SC49.

Like you mention about remembering to take the urso every day, I too still after all this time have to remember myself at odd times!

I have 600mgs per day and as I have noted, it seems that only the Wockhard co. do the ones I have in 300mg tablets hence I have 2 per day. I believe you can get them in 150mgs per day as originally I was going to be given 4 per day so I told the doctor I'd be hardly likely to remember to take those like that, 4 times a day just a bit much! So I got 2 a day. Had I been a bit of a pro with the urso I might have got the 4 per day and then doubled up with 2 morning and 2 with evening meal but at the time was given the diagnose, expect like everyone else on here, you are not thinking as straight (even tho' I had heads up and had already guessed was going to be told PBC as I asked the doctor's receptionist when she rang to tell me what meds I was tol be given so that 'gave it away'.

The leaflets are online and yest I even found a site that shows you what the tablets, capsules, etc look like. I have queried mine recently, think I now have a cheaper version to the NHS than what I originally had. I think the site is a Boots one. Just checked and if you click the link it shows ursodeoxycholic acid in the different forms. Perhaps if you are struggling to swallow what urso you have been given, there might be another brand for you to try? Mine are simple round tablets called urdox.

drugs.webmd.boots.com/drugs...

[gizocsi]

I've seen in an article, that a tried and well working protokoll of subscribing it is just taking the whole day portion in the evening, because more patients remember one time per day, it does not make difference, the author wrote. If You like to have it more times, there is my chaotic routine: If I remember, I take in the morning and with lunch, in the evening I check (if remember) and count Anyway, though so chaoticly, but I take Ursofalk every day, and my GGT and others felt from 3-400 to 100. So I think they work anyway.

[Jtxx]

I take 1000mgs of Urso a day (250mgs x 4) I take two with my breakfast and two with my evening meal. I have had no stomach problems and have been taking them this way for a year and a half. Think the food helps. Also kind of means they are almost split evenly time wise. 8am & 6pm ish. Works for me. Take care. x