Hi there... im actually wondering what does happen if you stopped taking urso?
I have done this. I can't say I feel worse..
Came up as secondary thought when talking to the doctor about meds.
I haven't been back in a while.
Might be a good idea to ask...
Tris
Diagnosed 5yrs stage 4...
Hello Tris79.
I've been diagnosed with PBC now for just over 6 years. (Started itching early 2010, this is how I got the diagnosis before the end of 2010.)
I have been taking the urso since diagnosis.
I have wondered myself but in my case, the itch was pretty intense all throughout 2010 and it was 9mths from visiting my GP (I am in the UK) to being diagnosed with PBC and getting urso so after starting, once initial side-effects - thought the itch was more intense, encountered constipation plus heartburn and a bit of tummy bloating - had subsided, the itch over time for me has changed. I tend to just feel the itch later in the evening (prickle after 9p.m., itch by 11p.m until around 6a.m) and I am not sure if I stopped taking urso how I would fair.
It's said that urso can perhaps slow down progression of PBC, as we know it is no cure. But I think for some who don't have symptons at diagnosis (normal blood work, no itching, etc) then I suppose no urso at the time may or may not help.
Now my LFTs (and GGT blood too) were slowly rising during 2010. I had my final bloods at the GP surgery August 2010 and then the first hospital appointment I had beginning of November (2010) the results came by with a drop in the above normal ones and I'd not taken urso so I think anything might be possible in PBC until we are at a certain later stage.
For all I know if I was to stop taking the urso my bloods might never act any different but I continue as for me I do think at present the itch might just revert back to how it used to be and if so I know I'd not cope. I only managed during 2010 as I didn't know I had anything that was going to be deemed for the remainder of life (I did think I was 'run down' and that it would all just go away) but thngs look different when you are informed you have something.
In your case it might be that your bloods are no different than they would have been on the urso but there's really probably no way of knowing, I think it is somehow a catch 22 situation for some of us regarding having or not having the urso (though the medical profession do recommend, especially if one is with symptons of PBC).
From what I believe, stopping URSO can be quite dangerous as there is no slowing down of the rate at which the bike ducts are being destroyed. You should seek immediate medical attention and start taking them again.
Gioielli,
Tris79 says she is Stage 4, so her bile ducts have already been destroyed, but Urso would still be helping to slow the progression of the cirrhosis.
I stopped taking it after 6 months, 6 years ago, because it made me feel awful .
All tests up until now have been the same ie. fibro scan, blood tests , at my last appointment in October all my test results have doubled .
Up until now I have been symptom free , suddenly I have started itching at night. Consultant said I should try taking a lower dose of Urso again but I am loath to as it made me feel so awful.
I'm going to try watching what I eat eg no chocolate and I'm going to try and lose the stone that I am overweight by to see if that helps.
I would disagree that" stopping Urso can be dangerous " my consultant said it was my decision and my body and it was up to me what I did , he didn't give me any gloom and doom stories.
Think you have to do what you want ....there are a lot of us that can't take Urso for one reason or another
I am taking Urso 3 weeks. I am pulling back a little from the 750 mg goal and taking transition from 500mg a little slower. I have begun to be constipated nauseous and have low level continuous stomach pain. As I never normally get these symptoms I will also watch food while taking Urso. No reason why post diagnosis I should suddenly feel physically any difference surely? The only change is the knowledge of my illness and taking Urso and vitamin c&d..
Hi Tris79,
I was diagnosed 28 years ago and have been on Urso for the last 20 or so years - I am now in Stage 4, with a number of the complications that are associated with having cirrhosis.
As you have said you are also in Stage 4, and that you haven't been back to see your doctor for a while, I think it would be advisable for you to go see him/her. Not just to discuss whether or not to take Urso, but to also have things checked out.
Once I moved into cirrhosis stage my 'treatment plan' changed dramatically - from annual blood tests and specialist appointments, to quarterly blood tests and specialist appointments; half yearly ultrasounds; annual endoscopes to monitor my varicies etc. It is important to have these tests done as things can sometimes change quickly once we have reached cirrhosis stage.
Take care.
Di
Hey thanks for the reply. I don't have the support I need and the environment I'm in is flaring up things badly... i also have fibro.. last 20yrs... i consider going to the doctors... and it's so far away... i need help but I don't have it.
C.
So, where in Australia are you?
Are you on Facebook?
There is an Australian PBCers support group on Facebook, it is a 'closed' group, meaning no one but a member of the group can access it - it's called "Australian & NZ PBC Support Group" - if you're interested in joining the group you just need to send a 'join' request, and then take it from there.
I live near The Entrance, on the NSW Central Coast.
Take care
Di
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