Amount of urso taken: I was diagnosed in June... - PBC Foundation

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Amount of urso taken

Mozzamo profile image
15 Replies

I was diagnosed in June 2015 after having liver biopsy started on urso,I did,not have any symptoms before biopsy just blood test showing something wrong ,when all the results of the biopsy were back I found out I was at stage 3 which supprised me as I was thinking I would only be in the early stages.I am taking two 150mg tablets three times a day, can anyone tell me if the amount your taking reflects the amount of damage to the liver.

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Mozzamo profile image
Mozzamo
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15 Replies
Karaliz profile image
Karaliz

Hi Mozzamo. Urso dosage is based purely on body weight.. 12-15mg per kilo of body weight. This is the only consideration when calculating each person's dose.

Best wishes

Karaliz

cazer profile image
cazer

Biopsy results are sometimes misleading.as far as i know that means that somewhere in your liver you have some stage 3 damage....it doesnt tell you how large an area.i was diag stage 4 16 yrs ago and yes my liver is now pretty much scarred byt you wouldnt really think that i would be that long ddeveloping if....so lts kind of how longs a piece if string.apparently a fibroscan is more accurate but ive never had one.hope this helps.

boneytoys profile image
boneytoys

Urso also has very low toxicity , I'm starting to wonder if itching is a side effect for some or is it reflective of an unwell liver

in reply toboneytoys

Hello boneytoys.

Urso can also cause itching as can a lot of other medications.

For me in the early days of taking urso (started Dec 2010) I thought the itching I had seemed worse but it sort of went back to how it was pre-diagnosis after a few months taking urso.

Itching is thought to be caused by used bile in the bloodstream and due to having a compromised biliary system with PBC used bile is thought to not be handled as well. My theory is that this used bile then seeps out via the skin pores as a protection as it is toxic and the itch is caused by the reaction of this used bile with the tiny nerve endings throughout the body. That is more than likely why we can have the itch anywhere.

It is actually said that itching and fatigue are of no correlation to how we really are with the PBC as it has been found to vary greatly from one person to another.

Roccadave profile image
Roccadave

Hi I have recently been diagnosed after Liver Biopsy I was told it was just a small area and was put urso 3 per day I was also told they would monitor my PSC 6 monthly as this is a general rule for PSC and the were confident in my long term future

teddybear7 profile image
teddybear7

Itching is a result of the condition as far as I've been told. Urso dosage is calculated on body weight apparently.

jimshe profile image
jimshe

Hi urso goes by weight as everyone else agrees good luck take care

Gioielli5 profile image
Gioielli5

Dear Mozzamo,

The amount of Urso you are on depends on your body weight. The dosage is 12 - 15 mg per kilo. So for 900mg you should weigh about 70 kilos or 11 stone. I hope this makes sense. Your liver biopsy must have hit a damaged area. Remember the damage of your liver will vary quite a bit. That is why biopsies are not always a reliable indicator of what stage we are at. It's just a matter of chance as to where the needle goes in. Take care and don't worry too much. Julie x

Louedwards profile image
Louedwards in reply toGioielli5

I was led to believe it went on your body weight. I'm in between dosages apparently. So on 2 250mg tabs a day. But may have to go to 3 depending. Only diagnosed 1st dec told it was early stages. That's through having bloodtests and ultrasound only.

As I was informed, urso is based purely on your body weight. I was originally prescribed urso in Dec 2010 and the consultant recommended 10mgs per kg body weight. My GP was asked to write the prescriptions and he rounded my weight to a figure of 55kgs. I am actually less as over the last 5 years I have lost a bit of weight but nothing untoward. I work out that I am taking around 12mgs per kg body weight. The norm is said to be around 12mgs to 15mgs body weight anyway.

I was diagnosed with symptons (itching and fatigue at the time - the latter I've not had since 2011), abnormal blood work and also it was found I have antibodies known as AMAs to give diagnosis. I never had a biopsy.

I'd not have a biopsy now if I was asked due to the fact that although it can diagnose PBC (due to cells changes throughout the liver apparently) I am not so sure about staging of PBC as one part of the liver as someone else has posted on this thread jjcan be perfectly healthy and another part damaged so you don't get the whole picture of the liver it being a large organ.

I've no interest whatsoever in stages of PBC. I go with how I feel and am confident that it can be judged via bloods and also ultrasound (once saw a tv programme live on air with 2 men having scans, one overweight and he had a fatty liver as it was pointed out there and then, the other was an alcoholic and he was said to have cirrhosis).

NotorDJP profile image
NotorDJP

I take 300 mgs 4 times a day. Its done on weight. I am somewhat overweight but not terribly so. I would double check your dosage. I was diagnosed at stage 2 in 2014 by biopsy. The others are right it is a snapshot. Some parts of your liver may be at a much lower stage. The liver is a big organ. In my case, from the pain I experience, i would guess my right side is more damaged than my left or middle. Not scientific i know but what I think.

Mozzamo profile image
Mozzamo

many thanks for all the replies to my query this was my first time posting on this site and I find it very informative,as I have not been given any indepth information from my Dr or consultant, just that it is progressive with no cure and that it could take a long time to get to last stage if ever. Despite being told this it is constantly on my mind.

Some of the posts that I have read talk about numbers and levels of things but I have,nt got a clue about mine.but they do say ignorance is bliss.

This disease has come late in my life as I am 72 and had a heart attack in 2010 I try to look on the bright side but its hard.

Many thanks again for your support.

Mozzamo

Carolliebs profile image
Carolliebs

There is a standard approved dose for max effect. Read on drugs.com. you can only ameliorate amount if bile in system to help digest food. Symptoms are often exterior such as dry mouth. Itching, skin lesions. The disease can be slowed. Not ended.

Carol Lieberman

dianne721 profile image
dianne721

Hi! I was diagnosed in July, 2015. Very high LFTs at annual physical. Sent to GI specialist who suspected PBC...liver biopsy confirmed Stage IV. Started on 250 mg Urso 3x daily. Am now taking 500 mg 3x daily...I have not stabilized yet, but numbers are down dramatically. Feel pretty well...bouts of itching and lots of fear regarding complications, etc., but dealing with itch and fatigue. Being treated at the Mayo Clinic in Scottsdale, AZ. Good luck and keep us posted.

Dianne

Calogia profile image
Calogia

The amount you take is determined by your weight. It has nothing to do with the damage to liver. I wa biopsied at Stage 4, several years ago. Still doing well. Take the Urso religiously and you can have a very long happy long happy life. Don't let it control you...good luck mozzamo!

Calogia

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