I was diagnosed in 2011 with PBC. Started with Questran. Then given UrsoFalk - which made my itching much worse. So gave up taking it.

[Pat_H]

Am now trying again with UrsoFalk, this time building up the dosage to 3 tablets a day; now 10 days in and on 2 tablets per day. Still itching but not as much as I did the first time. Has anyone any thoughts on the best times of day to take 3 tablets (next week).

[Hidden]

Hi

I was allergic to Ursofalk capsules - so I now take Ursogal tablets, which seem to be ok for me. I take 3 in the morning and 2 at night, they are supposed to be taken with or after food, which sometimes doesn't happen as I forget the evening ones and rush down to take them..... My brothers drs told him he could take them all together.

Good luck

[Pat_H in reply to Hidden]

Thank you so much for your answer. When I was on Questran the itching was down to practically nothing. I'm keeping on going with Ursofalk but the itching is enough to make it difficult when i go out and to waken me up at night time. As I've been on it for such a short time I'm hoping that the itching will get better. It took a month for Questran to get fully into my system.

[Hidden]

Good Morning Pat_H.

I was diagnosed end 2010. I was started on URSO (mine are branded Urdox) at the time of 600mgs as it goes off body weight per mg. The GP was originally going to prescribe me 4 tablets per day but I expressed a desire not to due to the fact I am not wholly in favour of taking any drug if possible and to me 4 times a day a definite no-no. So I was offered 2 times daily.

I read the info on the net prior to receiving in event I had PBC (was waiting for the diagnose at the time) and found URSO can be prescribed in 1-4 tabs per day.

So I originally took the tablets one at morning with breakfast and the other with a snack around 8.30p.m. In the early days of URSO I suffered from heartburn and a bit of tummy bloating but persevered as 2mths on from starting, the blood results had greatly improved but I did find the itch had got a bit more prevalent. When I saw the hospital doctor he said if he thought the URSO was causing the itch to worsen (as it can be a side-effect) then try stop taking it to see. I couldn't see the point in ceasing at the time due to the promising bloods so I plodded on.

I continued to itch for around 6mths after starting URSO but then I thought maybe I should try to alter how I took the tablets so I chopped one in half and took with breakfast, another in half with lunch and then the final whole one at teatime or before 6p.m.

I found the itch then started to cease during the day but anytime after 9p.m. would start and then that moved to around 11p.m. Currently I'm doing well with none or hardly any itch thru the day but it can be touch and go in the evenings, recently I managed a record 5 nights in a row with no itch but I find that at the time of the monthly cycle, it becomes a bit more prevalent at night.

I have since start of this year started taking the 2 whole tablets but one with breakfast and the other with an evening meal.

Like me I think it is a case of plodding on as difficult as it can be and perhaps noticing one day a slight break-through. I've still for the itch but it is much more tolerable than it was in the 10mths prior to diagnose and for around 6mths following. I put it down to the fact that the tablets start aiding our liver which in turn make us feel that much better and maybe that is why the itch can subside.

I know I would more than likely be inclined to take 2 tablets in the evening in your situation because I did read that there are patients out there who don't like me have equal divided doseage in tablets so theirs is not even each dose.

This is my opinion and moreso if I was informed by the hospital doctor you can take higher doses in PBC. Altho' URSO is a drug, I see it as a supplement to me in the form of a bile acid of which PBC patients appear to need.

Good Luck and keep us all posted as you are not alone out there. x

[Pat_H in reply to Hidden]

Thank you so much for your reply.

My Ursofalk is in capsules which look as if they contain a powder, so I'm not certain about chopping them in half. When I was on Questan the itching was down to practically nothing. It's now back with a vengence, but it took a month for Questran to get into my system and I'm hoping that Ursofalk may help the itching get better after a time - even if it is 6 months or more. The important thing is to improve my liver function, so perhaps I'll have to put up with the itching.

When I get on to three capsules a day I'll try your idea having one with breakfast, one with lunch and one with the evening meal.

Pat_H

[Hidden in reply to Pat_H]

Thank you for your reply.

Is it not possible for you to get your URSO in tablet form at all? Just a thought. Mine are the white coated ones and branded URDOX. I'd have a problem too having them in half too if I had what you have got at present.

All I can offer tho' it's not that helpful really here with the dreaded itch is to keep persevering. I thought I'd see better results with the itch within a shorter period of time but no didn't happen like that.

Like a vicious circle this itch as I find that in the evening when I'm flagging after being up all day I don't feel it the same if I am up and down the house whereas sit down and try to watch a bit of tv before bed and find uncomfortable! Tiredeness and the itch def do not go in harmony together.

Keep us posted as once you get a blood result that is going in the 'right direction' with taking the tablets, it is then that you start to feel that lift.

I had 5 whole days and nights last wk of being itch-free and then it started again but last night was not so bad but whether it is in my head or not, I had been juicing a lemon or lime and also an orange and taking that every day as I read lemon/lime is good for a detox. Hadn't had any in days but did yest so maybe it's that! Anything worth a try if considered unharmful.

Good Luck.

[Jill68]

I take 4 urso a day, 2 after breakfast and 2 after tea. I used to take all 4 in one go (as it was the only way I would remember to take them all!). My Consultant said that it didnt really matter but he would prefer me to take 2 & 2. They certainly haven't helped my itch - I am now on Naltrexone for that (after trying various other things) which does seem to be helping!!

[Pat_H in reply to Jill68]

Thank you so much for your reply.

My doctor told me to take 3 Urso capsules a day. At present I'm on two and at the beginning of next week start taking the third. I've had a reply from somebody else who suggested taking them with meals - which I shall try, but, as my itching gets even worse in the evening, I thinking that 4 would be a better idea, one with nothing in the evening. I shall take this up with my doctor as soon as I'm on 3 capsules a day.

Pat_H

[zipitydoo]

I was on ursogal tablets which seemed to get stuck in my throat and tasted awful but now have been changed over to ursofalk capsules which are better to take. i take 3 in the morning and 3 at night.

I know some people take them all at night as that is apparently when the liver is supposed to produce the bile. But as far as I know my liver hasnt got a clock in there so just take them as my doctor told me too.

[Hidden in reply to zipitydoo]

Hi

You are right they do taste awful and get stuck .......

[zipitydoo in reply to Hidden]

The capsules are tons better.

[Hidden in reply to zipitydoo]

I know but the rash i got from them was worse........ so i have to suffer the taste twice a day. Lol

[zipitydoo in reply to Hidden]

Oh poor you. I did find breaking them in half helped them to go down quicker.

[Pat_H in reply to zipitydoo]

Zipity doo

Thank you so much for your reply.

I didn't know when the liver produces bile. I presumed that the process of eating automatically caused the liver to start making bile. However, if the liver produces bile in the evening, this would explain why my itching is always worse in the evening.

Pat_H

[zipitydoo in reply to Pat_H]

Perhaps one in the morning then 2 with your evening meal. That way more bile would be made which might stop the itching.

Do you take the questran?

[Hidden in reply to Pat_H]

I don't know when the liver produces bile but I have read our livers are in motion and at their best around 2a.m., a time when it would be better to be asleep but as a lot of others with PBC are finding as I am, I wake up 2, sometimes 3 times during the night (which isn't good if on an itchy night as mine lasts until around 5a.m).

I know that when we eat our gallbladders release bile as that is the store but with PBC we are supposed to be a bit lacking in bile flow hence the URSO.

I think part of the secret but don't hold me to it is to have a minimal amount of fat in our daily diets and I'm convinced that on the days I am now pretty much itch-free is because I've got the balance between bile and diet right maybe.

[itchyandscratchy]

i take urso in liquid form due to an unrealted problem with my oesophagus which means I find swallowing food, drink and tablets difficult. I am lucky in the fact that urso has improved my itch. However, i have had to increase my dose to twice the original amount due to PBC progressing to cirrhosis and I have found that this has made me quite ill with sickness, diarhoea and stomach pains,Am currently not taking urso whilst I wait for my body to get over the past weeks trauma and will reintroduce it tomorow at a lower dose with the intention to build it back up, as long as I can tollerate it!