Urso dosage: I was diagnosed a few weeks with... - PBC Foundation

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Urso dosage

Pea1234 profile image
34 Replies

I was diagnosed a few weeks with PBC. Today I was put on urso. I am taking 1000mg per day. 500 in the am, 500 in the pm. Is this too much? I weigh 52 kg

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Pea1234 profile image
Pea1234
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34 Replies
Lindz1 profile image
Lindz1

I'm on the same dosage and I'm 53 kg I have wondered about this myself i just think it's down to the consultant and the blood results.

boneytoys profile image
boneytoys

I believe it goes on weight but there is a maximum dosage too

Anne123_45 profile image
Anne123_45

Hey guys im 62kg and am on 900mg. I've been taking these from diagnosis and my first bloods were extremely high (alk phos 1042). I take all before bed and my bloods have dramatically improved in 6 months down to 125 alk phos. I'm due to get bloods done in next few weeks so hopefully they'll be improved again. My understanding is approximately 150mg for every ten kg .. Could be wrong...

Anne123_45 profile image
Anne123_45

Ps each of my individual tablets are 150mg..

Junolee profile image
Junolee

I am 60kg and take 1500mg a day I've said it to various doctors at my consultants clinic and my own GP and they all say not to worry he knows what he's doing so I am happy. Results have been good so not complaining.

Goks profile image
Goks

I was diagnosed about 12 years ago and was prescribed 1000mg a day. I have since put on 4 stone but my consultant has not changed my doseage. So it has been the same for 12 years. So much for it being based on your weight! I will challenge my consultant next visit.

Cat19 profile image
Cat19

Hi Pea 1234

I take the same dosage but I'm 99 kg they must want you to have that dosage. Who put you on that dosage? Good luck wishing you well.

in reply to Cat19

It's usual for the consultant to prescribe ursodeoxycholic acid (urso) and in what dosage. The GP then writes the prescriptions up, well he did in my case as the consultant informed the GP to tell me I'd PBC and then what to prescribe and in what dosage. Medications are graded, common ones any doctor can prescribe and also dentists and nurses now but others are consultant only who informs your GP how to prescribe. Some I have found are only consultant presribed and written but these are usually very expensive to the NHS in the UK and tend to be off-label.

Pea1234 profile image
Pea1234 in reply to Cat19

I live in Orlando, FL USA. I like my doctor but PBC is rare here in the states. I still think my dosage is too high. I do not think he has many patients with PBC, although I could be wrong. He was strongly recommended as a doctor to go see.

Juamcc profile image
Juamcc in reply to Pea1234

I think my dosage is too high also. I'm taking 3 300 / day. I want to cut it down to 2 to save money. My lfts are just a hair above normal. I have big hands and big feet so I think I'm big-boned and that is not considered in this algorithm. Any opinions out there?

PCBnPBC profile image
PCBnPBC

I am 10stone 9 lbs or about 70Kg - I am on 900mg and about 3 consultants have all looked up weight to dose ratio and all agree I am on correct dosage. JunoLee on 1500mg sounds a tad hi to my INexperienced era, but I do not believe the number of pills (1.e 6 x 150 or 3 x 300) or take them all at one time or spread them over the day makes any difference what so ever. different consultants have different views, (on me) So I have seen that they do not sing from the same hymn sheet, so I suggest you take as you find convenient (is my method) at least.

in reply to PCBnPBC

And another thing to add is that here in the UK a lot of it goes down to money and cutting back on prescribing, hence some patients are often started on a lowered dose and then it can be upped later on.

Doctors can be disagreeable on medications, treatment, etc and also it seems do manufacturers of the drugs.

PCBnPBC profile image
PCBnPBC in reply to

Anyone know the cost of Urso? I am now on transplant list, just been put on Rifaximin, my mate the pharmacist (mates in last few months due to the 23+ meds I take daily) informed me the Rifaximin costs NHS £250 per month and on private scrip would be £500 - nothing like some of those clever but very pricey cancer meds, but I have no complaints re. consultants holding back on prescribing what I need. But I am sure there is some variation across the UK however.

in reply to PCBnPBC

Hello PCBnPBC.

Here in the UK urso apparently costs £90 for 3 months (as my GP had a moan at me during 2011 when I asked for 3 months as opposed to one/two due to fact I pay) BUT that was the branded urso. The generic as it does exist costs even less and when I checked a couple months ago I found out that what I was taking is costing around £40 or slightly less as the costings I found are for 30 days tablets and not 28 days that we seem to have to accept now.

Here is the MIMS site where the costings are for UK.

mims.co.uk/Drugs/gastrointe...

I find it a bit ironic really that in England the NHS can shell out over £100 for a short supply of a drug targeted at children for ADHD (of which I am very sceptical about) which is known as Ritalin yet for a medication that is used to treat a condition that will never go away there is some grumblings from our GPs. (But have to remember as I did some research myself last year, it's down to bonuses for GPs and their budget and what the Health Trusts want them to write. I found out that there is no set rules regarding a supply of a repeat prescription (have an official letter stating so) yet Health Trusts inform GP surgeries that the limit should be 28 days. What's the point then of calling them repeat prescriptions?) To note, Ritalin is now available generically (know a child who is on, original and now generic).

How I see it is that if a medication is available and the patient wants to take it and it does show to be of some aid, surely that is then costing the NHS as that is what I am on subject of, less to treat a patient in the long run perhaps? Life can be very strange...

susanburgess profile image
susanburgess

No this is the amount I take I take mine all in the morning I have done so for 10 years

hotdog profile image
hotdog

I am approx 10 stone 10 lb and took 750 a day for the first year and I had to spread them over the day but on my last visit to the consultant she said I could now take them all at night which is much more convenient. I have put on 10lb in weight and having trouble shifting this although I have reduced my calorie intake. I will however persevere with weight reduction as clothes too tight now!!!!

When I told the consultant I had put on weight she said good (I am already a stone over weight!) so I thought my side of the desk is it not good!!!

Dosage does seem to vary with different people so I guess blood results have a lot to do with this. So just go by what they say as they are the experts in this field.

spoul profile image
spoul

I'm 74kgs and take 1250 mgs daily in one dose, the instructions are

47-62kg-------750mg

63-78-----------1000mg

79-93------------1250mg

94-109------------1500mg

This was published in Pbc magazine dated May 2013 and written the pharmacy making urso.......dr falk pharm uk ltd

Hope this helps I took this to show my consultant to get correct dose! Take care x

in reply to spoul

Hiya spoul.

I have read of variants taking urso in PBC on other manufacturer's leaflets/websites. I've not had the Dr Falk which I think are the 250mg variants of urso? I was on 2 x 300mgs originally known as Urdox by Wockhardt but they had a licence revoke July last yr and tablets withdrawn. I was then offered 150mgs and have had 2 different manufacturers. i found the Ursogal seemed to give me the side-effects longer and when I got a repeat script asked the pharmacy for another 150mg and I came away with Destolit of which I've actually had no problems. All down to the fillers in the tablets I reckon as I have checked them all. I did prefer the Urdox.

Pea1234 profile image
Pea1234 in reply to spoul

Thank you SPOUL. This helps. By the chart above I should only be taking 750mg. I like my doctor and from what I have heard he is one of the best in the area. However, here in the USA this is a rare disease and I do not think my doctor has dealt with PBC. I had so many questions that he could not answer. This website has helped me a lot.

Juamcc profile image
Juamcc in reply to Pea1234

I agree about the knowledge of PBC in the USA.

Hello Pea1234.

I think it depends on where you are as from what I've read on here previously, it seems there is a variants.

I was diagnosed Dec 2010 and the consultant did state in his letter to the GP (I got a

copy when I was requested to see GP as he gave me the diagnosis) that 'the usual dose' was 10mg per 1kg body weight. I was rounded off to 60kgs and so was prescribed 600mgs daily. I am 54.88 in kgs.

I have read articles and even in PBC Foundation (but please do not ask me now where I read it, I suspect it was in a Bear Facts) that they say the usual is 15mgs per kg body weight.

But saying this, it could be a case of some consultants will start a patient at one level and then go from there. I have read other reports a couple years ago that stated that taking higher doses of urso doesn't appear to make any difference to the results from trials of urso.

I've never suffered from diarrhoea that some taking urso do and reading about this, I somehow think that it is caused by perhaps a patient taking a slightly higher dose than would be required but that is my way of thinking. I say this due to the fact that if one was to take an overdose of urso in PBC all it would apparently cause is diarrhoea as it would apparently just go through our system, the excess not required.

Urso apparently has no known dosage so this is why a rough estimate down to body weight and mgs are calculated and then repeat bloods can give a better picture.

In the early days of starting urso I did experience certain unpleasant side-effects, heartburn I never suffered prior to starting urso for one and a bloated feeling for a few months too but these soon settled and vanished. So in my own estimation if I did suffer temporary side-effects (and have had same with a different manufacturer's urso) my digestive system was reacting so my dose seems about right to me.

Hello once more. Just to add due to replying to another posting and pasting the site in here, I have noticed that this article on MIMS does in fact give a dosage for urso for PBC. (Usual between 10mgs-15mgs.)

Here is the link:-

mims.co.uk/Drugs/gastrointe...

carpman32 profile image
carpman32

Hi I take 900mg once a day at 9pm and have been on this for the last three years, and have had no problems.

kristieerhodes profile image
kristieerhodes

I have been on Urso since 2005. I was originally taking 900 mg a day. A few years later I was increased to 1500 mg a day. Last year my GI doc said I needed to be lowered again because the dose was too high for someone of my weight (128 lb or 58 kg) and there are cardiac issues that they said are now linked to overdosing with Urso.

Pea1234 profile image
Pea1234 in reply to kristieerhodes

Hi kristieerhodes, what is your dosage now? I hate taking too much of any drug.

kristieerhodes profile image
kristieerhodes

I take 900 mg a day; 3 capsules at 300 mg each

Juamcc profile image
Juamcc in reply to kristieerhodes

According to this group, you only live 20 or so miles from me. You seem to have amore serious condition than I. I would like to talk with you sometime but I don't know how to email you personally. How are you doing now?. How are you doing now? It seems if I wave my hand the printing duplicates. Just wondering what specialist u see. Currently I'm going to UAMS in Little Rock but I'm getting tired of the drive. Hope you're doing well

Pea1234 profile image
Pea1234 in reply to Juamcc

Hi Juamcc. My email is giselap@yahoo.com. I am in Orlando, FL. Where are you? Email me and we can later chat. Currently out of the country but will return next week.

Juamcc profile image
Juamcc in reply to Pea1234

I have to leave quickly but my email address nitamcracken@gmail.com

Juamcc profile image
Juamcc in reply to Juamcc

nitamccracken@gmail.com

kristieerhodes profile image
kristieerhodes in reply to Juamcc

Juamcc,

Did I ever reply to your last comment? It's bad when you can't remember little things like that. I go to the Little Rock VA, just next door to UAMS; I think my docs are from UAMS though. Dr. Suzuki and her team are the ones that are me; I only see her once a year but her team consults her each time they see me every 3 months. I can never pronounce the doctors names; Valcella or something is one of them and another that starts with an R. All of Indian origin I think other than Dr. Suzuki, as in India, not meaning any disrespect. I live in London, just outside of Russellville. Where do you love?

Juamcc profile image
Juamcc in reply to kristieerhodes

I live in Conway, AR. I asume you drive through when going to VA. my email is nitamccracken@gmail.com

kristieerhodes profile image
kristieerhodes in reply to Juamcc

I sure do. Thanks for the email. I'll send you mine.

Lexi_Img profile image
Lexi_Img

That is what I take according to my weight.

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