I spent a day running from two different Hospitals getting all my information. Then I made an appointment with a new Doctor. He is highly

[2006]

recommended. So I will be seeing him on April 2nd. I have gathered so much information from this site I feel prepared to ask the questions I need to be answered. I am really hoping he doesn't want too many tests done. Well I guess I just wait and see. I do want to ask if I am on the correct dosage of Ursodiol. I am on 300 mg. twice a day. I weigh 100 lbs.

[Hidden]

Hello 2006.

Ursodeoxycholic acid (urso for short, some call it UDCA also) is normally prescribed between 10mgs-15mgs per kg body weight. I was prescribed 600mgs daily in Dec 2010 and my weight is 120lbs. Mine was prescribed at a round-off of 60kgs. I did put a posting on here recently about urso but checking link short time ago, the full info doesn't appear to be there. If you put "ursodeoxycholic acid mims uk" into the search and then click on the first one it gives more info for the urso available in the UK (where I am).

Normally when you have a PBC diagnosis you don't normally have any further tests with the exception from time to time a scan perhaps. (I've not since year of diagnosis 2010 but I did ask for a mutual discharge from the hospital back in later 2011 as I was doing ok and only had the itch by then (had fatigue prior and just after diagnosis). He agreed but said if things started to go in the wrong direction in future I'd be referred back by my GP. So far so good.)

You will of course have repeat bloods as you more than likely know. I think it depends who your doctor is, some to me seem to be keen on wanting to find out more, others can go how you are and how the bloods and urso are doing.

I've had to go in to see my GP when I registered there last year being a new patient and then putting down on a form I had to fill out I had PBC and what meds (I only take urso) prior to my medical records being received from another practice.

I have changed my GP twice since diagnosis. The surgery I am with now was one I was with many many years ago but there are 3 different doctors there now, the others have retired. Thought was going to be ok but then a new one joined and she is young and already I have had a run-in with her last year as she rang to say my LFTs were abnormal but she'd not read my notes properly and hadn't checked any previous results again the ones she was going through. One of the other GPs saw me on registering and she seemed to be interested in finding out more about PBC so I shall continue to go and see her if I have to go in but it seems a lucky bag when the blood results come in as to who sees them first and also the same with repeat scripts as I had the 3rd doctor in practice query my urso quantity last year.

[florrie505]

Hi, i think that could possibly be a starting dose for you adjusting to your weight and height.

The Doctor adjusts the dosage if there are changes to your blood results.

Sometimes, it takes a long time and many Doctor changes later until the patient is diagnosed. Good luck x its hard not to worry but just try to take things easy and take it all in your stride.

[Hidden]

Hello.

Urso is just prescribed by weight only. Apparently it is not certain how much urso one needs and in instances like this body weight is preferable.

I was started on 10mgs per 1kg body weight and I am still being prescribed that. I did once read a couple years ago that in trial stage it wasn't found to be much difference from a patient taking a higher dose of urso results-wise with regards to the blood results.

[Belgravia]

Hi. I am 54kg and I am on 1000mg (four capsules at night) per day of Urso (punching above my weight!) - initially on 750mgs which lowered my LFT's for a time but they gradually climbed again. Urso intake adjusted to 1000mg and an improvement seen. However, levels still fluctuate. I am advised that LFT's can change per day, i.e. up & down. I know myself when my liver enzymes are rising, it tends to be when I have an infection or inflammation & more itch than usual. When tested in time of feeling well, more often than not my LTF's tend to reflect same. I was diagnosed 2008.

[Hidden in reply to Belgravia]

Interesting reading you say you know when your LFTs are rising as I've not got a clue.

I have found over the last 3yrs of taking urso that if I think I've had a good few months and then have bloods done, they tend to come back with a slight rise and then when I've had several months of not feeling I've done so well the LFTs come back much much better than expected.

I haven't to my knowledge had any infections or anything really in my 3yrs since diagnosis so I can't really comment there.

I cannot work the itch out at all, in fact now I think fair to say I've given up there. I used to think of allsorts of things to try to alleviate it or make it temporarily vanish all to no avail. I am now stuck with itching from later evening until around 5a.m. If I am lucky enough to fall asleep when I go to bed I sort of get through the night without knowing much about the itch but I often wake up in the night and when I do the itch isn't really there until about 10mins after I do wake and if I do not return to sleep within a short period of time I then have the irritation of it.

I've even tried taking urso at different times since the beginning and found for me that all at once doesn't seem to be that great. I did read in the Bear Facts magazine last yr that you can take all the urso at morning but when I experimented there myself I found I started itching later morning which is something I do not normally do. I put it down to the fact I had taken a great quantity of urso all in one go and pruritis which is the itching can be a side-effect so I expect it was this.