What is the timescale for you for the review of the urso meds?

Just wondered as apparently I've been informed it is every 6mths. First I had heard of these when I was diagnosed with PBC Dec 2010 as prior had kept away from doctors and urso was the first repeat script I had ever really had. I think 6mths is a bit much in my case as I have bloods currently at a 3mths interval at the GP so one would think that at the time the doctor scans over the results he would automatically know regards the medication.

Just seeing the GP at 12mths intervals as cazzi says on another question answer (see the one about 'how much urso are you prescribed') to me if there are no in-between problems would in my opinion maybe better for some of us. I'm of the mind that if everything seems ok and I feel ok as have presently for a few mths (despite Feb bloods being a very slight rise on the previous 4mths but nothing untoward), then reducing certain doctor visits would surely help one get on better at living life?

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  • As far as I know Urso is for life as is PBC. The only way the doze would be tweaked is if you either lost or put on significant weight as it is worked out on a weight/height ratio. X

  • Hi Jtxx.

    Yes that is what I have read as none of my doctors have said 'for life' or even 'long-term' either! The doctor I saw at hospital 3 times in a yr just said on the 2nd visit after diagnose he'd 'see how the urso goes'. Funnily enough when I got the diagnose Dec 2010 I was weighed at the GPs for the first script as the hospital doctor wrote to him to give me the results. There is the standard weigh-in at the hospital each time (blood pressure wasn't taken on my 3rd visit) but I knew I'd not altered weightwise in all the time since start to currently (unless you count maybe one day a scale showing a pound or two down and then up).

    As yet I've never been weighed at the GPs surgery and been with this GP surgery for 15mths.

    Saying all this I'm sure us as patients know if we are putting on or losing weight.

    I calculated my dosage not so long ago and I'm in the old imperial measurements still and the tabs were given in kgs body weight. I am on a dosage that covers 10lbs extra in the tablet mgs so in a nutshell I can't think why constant weighing is that plausible once a patient has been established on urso for a certain length of time (ie 16mths like I have).

    PS As far as I understand the urso goes off just our body weight, not heard of height. I read some place (some scientific study from the 1990's think was) that it's not really known how much urso should be given in PBC so as a rough guide goes off so many mgs per kg of body weight (my hospital doctor put 10mgs per kg of body weight on his letter to the GP).

  • Hi, I didn't know Urso was dispensed on a weight/height ratio, I've been on 250mg 3 times a day since Jan 2010' I've been back to the consultant once in this time, I was told at my last appointment, which was Jan 2011 that they would send out my next appointment for Jan 2012' I'm still waiting".....mm, I have been in touch with the appointments department and they said thy would contact me as soon as possible, that was over 6 weeks ago!

  • Hiya Dinny.

    I'd not bother chasing the appt up unless you really want the details now (well that is MY way of thinking!).

    I'm sure if you are having bloods at a GP as sure the GP would note the results and ask to see you meanwhile.

    What is the timescale of yours? Mine seem to have been a bit erratic. Hospital doctor agreed to discharge me Oct last yr as I wasn't happy going the distance for a few mins and also not really being informed of the blood test results except a few words of "doing well", etc. The hospital doctor said 6mths for bloods but the GP decided now back with just him he'll have them every 3mths. I don't mind, it is the fact I have a run-around after to retrieve the actual results as in the way of figures. Off-putting to say the least.

  • Hiya, Peridot, I'm not getting bloods done at my GP, the hospital consultant gave me 2 blood forms, one for 6 months after I'd seen the consultant and one for 6 months later, I used to get them done every 3 months at the GP Surgery, but since attending the hospital I don't go to the GP.

  • Hiya Dinny.

    I found during 2011 when I visited the hospital 2 times (6mths between appts) I had bloods taken and it took just over a fortnight to receive the results of these bloods. My GP surgery informed me at the time when I contacted them to find out if they had results thru that I had to get them from the hospital (tho' they had them!) as I had them done there.

    I have found they take quicker at the GPs and for me, it would be a trek to the hospital and the time there would be lengthier due to a nurse doing the usual weigh-in, etc before the bloods and also appt times not exactly to scheduled times (over-running), I couldn't see point.

    Regarding my GP he has asked me to go in at 3mthly intervals for now but at the end of the day depends when I make the appts to go and see the nurse for her to do them.

  • As the consultant took my weight and height before he prescribed the Urso I just assumed it was worked out that way, possibly not? X

  • Hello again Jtxx.

    Only just thinking about it, I think the height is taken to assertain along with weight what the BMI is as when I went for my first hosp appt my weight and height were noted. I was nosey and asked what my height was as I'd always got it into my head that I was just 5ft as that is what I was in my early 20's when pregnant twice. I discovered I am now 5ft 2 inches and the explanation was I hadn't finished growing when I had my 2 children, that is why.

    I already knew my BMI courtesy of a Boots scale as tho' I'd NEVER ever used them, my husband did his same time.

    Consecutive 2 visits to the hospital I didn't have height done again, just weight (not impressed last time, open door with Waiting Room full view to witness! What I hate about hospitals). Blood pressure seems to have been forgotten by then!

  • Just my 2 cents, here - -

    Here in the States I believe the Urso is gauged by your weight, tho' ya'll may be right for the "one time asking of height". I remember when my Dr. put me on the Urso, he had called me (which he did once a week after their Dr. meetings**) and he asked me what my weight was and he did some figuring right then and ordered me a script for 900mg.

    ** I found out about a month after being dx that there were 3 of us patients with the AIH/PBC overlap in with that group of Drs. and that we were the main subject of their medical discussions -:) I sort of felt like a rare specimen. LOL

  • The reason here in England your height is done on the first hospital visit to see a consultant is because with the weight we are apparently then gauged within a Body Mass Index (BMI) scale the height of which is needed.

    I know when I worked within a doctors' surgery (I was their domestic but worked in surgery hours) I talked about the BMI chart with an Healthcare Assistant at the time as she was dieting. My height and weight at the time (this was prior to PBC surfacing) showed me to just be on the line which meant that just over would have put me down as overweight!!!

    I did lose a bit of weight in the months (8) I was going thru blood tests and scans before the PBC diagnosis in 2010 and when I went on the first hospital visit it showed my BMI was within normal range but I already knew this as I'd been on Boots the chemist scales in town which did a print-out of this for you.

    I know since 2010 I've not gained any weight but I do have periods where I lose a bit (around 7 pounds) but then it appears again. Given I have PBC now I don't think I'll ever put a lot of weight on despite when I was a teen being about 2 stones overweight.

    I recently had good blood test results so it will be Oct now before I have the repeats at urso review (every 6mths it is at mine as I asked as I got the hospital doctor to agree to discharge me for now given I only have the itch as my annoying sympton of PBC presently or I'd prob not have one at GPs if I was still seeing the hospital doc).

  • Ursodiol dosages are well known and widely agreed upon weight and weight only at; 13 to 15 mg/kg/day, It's the amount of daily doses which is in question, it's either 2, 3 or 4 divided doses. personally I have been breaking up my dosage throughout the entire day because I wish to have urso in my system at all times,

    My specialist at Mayo told me I could take 2 -500mg tablets twice a day,(I'm light now at 150lbs being I just found out and have been losing weight for a year), my specialist told me there has been studies showing there is no difference between 4 spread out during the entire day and 2, I'm not buying it and I take 4-250mg throughout the day, he's fine with that, here is a link to the Ursodiol dosage as per body weight per day....

    pbcers.org/index_files/page...

  • Interesting reading your comment hopepbc.

    Well coming up to 2yrs on urso, I have to say that my experience so far with urso (I have 2 x 300mgs per day and my consultant recommended I start on 10mgs per kg body weight), I was originally going to be given 4 tablets per day (4 x 150mgs) by my GP and I said no way would I remember to take those like that. I have had trouble remembering to take the 2 in the last 2yrs let alone 4 as I am just not someone who can accept these tablets could be for life.

    I had good results at one in the morning and one in the evening but later last yr it was shown my bloods were on the slight increase again but I am beginning to wonder if it is going to be a bit seasonal with those (worse through the colder months, better through the

    warmer) as my recent (October) bloods have shown a slight increase like last year this time (after a good fall back in May).

    So later last yr I took to chopping a tablet up and taking 150mgs with breakfast, then with lunch and taking the final 300mgs at night. I found it didn't make any difference so back in Feb after a notso good results I went back to 2 x 300mgs a day and come May had really god results but take note the mth prior to having new bloods done, I did take a milk thistle at lunchtime also and do think that might have had something to do with it. (I stopped taking the milk thistle after the good May result and result from Oct wasn't as good so I'm now back on the milk thistle so shall see come January as I have the bloods every 3mths at the GP.

    On reading a bit of research online from several years ago it was stated that patients can take more urso but it has been found it didn't actually make much difference. In my view I have tried taking an extra 150mgs earlier this yr for several wks and all it seemed to do was make me itch even more than I normally do so got me wondering....

  • Peridot, I have some interesting feeling on this, first I believe I may have found out I have PBC late because I had a month of jaundice and 5.9 bilrumbin which is a bad sign, However I'm in great shape, rarely drink and my mri showed my liver is not enlarged, my portal vein is patent, no varicose, no evidence of any reanalyzed umbilical vein, no billary ductal dilatation hence I'm hoping I just went critical real fast and can bring my levels down quickly before it destroys my liver.

    The bilrumbin need to come down and fast, hence I'm talking the high recommended dose, however I believe the dosage is a very personal thing and depends on the stage and how one reacts to urso, as time goes on I will take blood tests and tweek my dosage to what I believe most suits me.

    Also I told the doctors at Mayo on my visit after 2 weeks on urso that it had just begun work and they didn't believe me, they they got my test back and saw a 50% decrease in bilrumbin and were amazed.

    I knew the urso was working on the 10th day of usage by looking at my dumps (we are all friends here and stool sound too...clinical;) so I'll use the word dumps) sometime I would like to talk about all the information I've learned and observed by looking at what comes out of our body.

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