urso: Hi everyone I live in West sussex and... - PBC Foundation

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urso

Shirleygreen profile image
16 Replies

Hi everyone I live in West sussex and for the last few months have been having difficulties in obtaining urso once again. this happened a while back then came right. Now today my pharmacy told me she had no supplies and could not obtain any then she looked again and said she did have some but not my usual ones I am usually on 600 mg a day these new ones were in 250 tablets and therefore she could not give me them but advised I go see my gp and see what they said. They told me to use the 250 mg tablets, cutting one in half and taking two of the 250 tablets making 625 mg. Surely this is now not what we have to do??? Has anyone else got a problem with their supply or is it only me???? Then I am thinking why do they have the 250 tablets and not the others ?

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Shirleygreen profile image
Shirleygreen
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16 Replies

Hello Shirleygreen.

I presume you used to have the 300mgs by Wockhardt that I started on Dec 2010. In July 2013 these were withdrawn and I had to take 150mg tablets. I have had the generics which were by Galen (had side-effects that kept lingering) and for the last 20mths I've been getting the urso written on prescription as "Destolit 150mgs" and they are by Norgine.

I won't be requesting a script for the urso until later Sept and hope that there isn't a problem once more. I will see if I can do a bit of snooping and see what I can find. I originally read about a problem with the 300mgs on this site and then checked it out myself back in 2013.

I take 600mgs per day so for me the 250mgs would be no good either. I presume you are taking the Dr. Falk ones perhaps as they come in the 250mgs.

I did last email Wockhardt back in Sept 2014 asking when and if the urso 300mgs they produced would be back in manufacture but they couldn't say for definite at the time. I had no problems whatsoever with the Wockhardt which for me originally were manufactured as the brand URDOX 300mgs and then at some point later on the brand name was dropped off packaging so I think they were then generic by Wockhardt but I never had any problems at all with any really.

I know back in early 2014 when I went to Sainsburys for the generically written prescription (if it generically written it will just state ' ursodeoxycholic acid' followed by the mgs in tablet form), they refused to give me the Destolit that I had asked them for when the generic 150mgs weren't proving very good (I kept having constant heartburn that never vanished) that they had been willing to for several months. They stated to me that Destolit were dearer so this was why. I contacted another chemist to ask and I got a really helpful pharmacist who informed me to return to my GP and ask for the brand name written on the script if I was having problems. I did do so and since have the branded prescription.

I think a lot of it is all down to costings. Ironic really but that seems to be how things are, everything always comes down to 'pound notes, shilling and pence' as the old saying goes.

Hope you get somewhere with your GP as I found mine hard work when I went back re the urso. They didn't seem to have a clue about the brand names of the urso and it was only when I made an appointment to go in and to me waste time by doing so that the GP got out her book with drugs in and did a bit of checking what was available at the time. I've since been asked by another GP in

practice if the Wockhardt ones are back in circulation when he should really

know!

I would really like to know how you get on here as I'm on 150mgs x 4 tablets daily.

Hello again Shirleygreen.

Checked on the Norgine website, here is the link, apparently the Destolit 150mgs that I have is still available.

norginepharmaceuticals.co.u...

Shirleygreen profile image
Shirleygreen in reply to

Hello again. Yes I think I am following in your trail I am now on the destolit 150 and I take four and I started on the same one as you in 2010. I cant remember what the previous ones were that ran out last week but I know the tasted disgusting if you didn't swallow them immediately thanks for all your help x

susanburgess profile image
susanburgess

Try to phone chemist on line to see who stocks urso

Val02 profile image
Val02

Hi Shirley - I'm also in West Sussex and I am having the same problem again. It's a pain because you need to get a new prescription each time and start cutting the tablets up but in the case of URSO I don't think the dose is a precise science.

Shirleygreen profile image
Shirleygreen

Thanks everyone will see who the manufacturer is when I collect prescription today and keep you all informed. I cant remember who the manufacturer of my previous urso was x

GrittyReads profile image
GrittyReads in reply to Shirleygreen

Ask your GP what the exact prescription was - including manufacturer, really the receptionist should be able to tell you, from quick look at your records - I know mine would. If not, make a fuss, get the GP to call and tell you. Not being able to get prescriptions is not to be taken lightly.

in reply to Shirleygreen

Hello again Shirleygreen.

When I originally had my prescription changed from 300mgs to 150mgs I was supplied with brown pharmacy labelled bottles with 'ursodeoxycholic acid 150mgs' on them. I started having bad heartburn after taking and not knowing any information about the white uncoated tablets I went back to the pharmacy and asked for the patient information leaflet that comes with the boxed Destolit I have now been having for 18mths.

This is how I found out where the 150mgs were supplied from, different company to the Destolit and not branded but a generic.

CathieG profile image
CathieG

I've not had any problems here in Yorkshire. I'm on 2x 500mg a day Ursofalk.

in reply to CathieG

Hello CathieG.

The tablets Shirleygreen is mentioning is the 150mgs of the urso. There are a few denomination available. Like Shirleygreen I started on 300mgs as I was on 600mgs per day.

The ones you mention you take are in multiples of 250mgs. I find it odd that the same pharmaceutical cannot manufacture the urso in all the denominations.

Urso is prescribed via weight and mine was rounded off to 60kgs when I started taking urso Dec 2010. Working out now that I am about 10 pounds lighter than I was Dec 2010 (though my weight has remained at the same weight n ow for the last 3yrs (I put the slight weight loss down to fidgeting about all night and the fact I don't eat anything followoing my evening meal), at 250mgs of the Ursofalk I think in my case I'd be taking too much as 500mgs is less than my 600mgs daily and 750mgs, well I think that would be far too much. Some days now I feel that I am swimming in urso.

CathieG profile image
CathieG in reply to

Hi, I just checked thebox again and my dose is 2x500mg, I've never been on a lower dose than this. I e always had the 500mg.

in reply to CathieG

Hello again.

By body weight you must be on 100mgs but it depends on what mgs your consultant recommended. It is said that we should be taking between 12mgs-15mgs per kg body weight but it has been found that it can vary.

I was recommended to start on 10mgs per kg body weight at diagnosis. I was slightly heavier then than I am now (have been same weight for a few yrs) and I now work out that I take 12mgs per kg body weight roughly.

I think it depends on what your doses are split into that depends on the tablets. I started on 600mgs and got 300mg tablets though they were available in 150mgs at the time. I used to take the urso at breakfast and then evening.

Since the 300mgs were withdrawn I have had to have the 150mgs so I was advised to take 2 at morning and 2 at evening.

It is said though that with the urso there doesn't seem a right way nor wrong way of when we take it and at what frequency. I have experimented myself with taking the urso from all at once after breakfast (quit after a few days, found I was ithcing later morning that I never do) and then in 4 doses throughout the day (didn't think that very good for some reason, didn't feel quite right) so I stick with the twice a day.

dollydaydreams profile image
dollydaydreams

I can't see a problem with you taking 3 X 250 mgs a day, I am very small and they are the ones i Take, but i have ursofalk named ones by dr faulk ( capsuals ) and will not take any other as i can't swollow tablets, I have never had a problem getting them at asda chemist.

teddybear7 profile image
teddybear7

I'm on multiple 150s & have had the same issue Dr upped them whilst they got desolit in they're more expensive for the pharmacist apparently.

in reply to teddybear7

Hello teddybear7.

Yes the Destolit are more expensive than the generic of the 150mgs of urso but personally I do not care. I was given the 150mgs generics after being switching from 300mgs (when they were withdrawn) and had horrid heartburn that persisted for over 3mths., so much so that I asked for a different one and Destolit was the only other available. Had not problem with that as I never did with the Wockhardt urso previously.

Cat19 profile image
Cat19

Hi Shirleygreen Sorry you are having trouble getting your Urso I take 2. X 250 in morning and again at night . I hope you get it sorted as bit hard to cut a power capsule in half.

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