I was diagnosed in February 2012. I have been on Urso 500 twice daily since then. My liver enzymes are still chronically elevated.

[Nykaba]

Has anybody else had this? I was told by my specialist that some people react differently to the medication. Also, has anybody seen the GI team at Mayo clinic? Thoughts?

[carrot14]

I too was diagnosed October 2012 and I have been on Urso 500 twice a day since then. I have had blood work done in November and again as recent as two weeks ago. Both liver enzymes results are still elevated. When the nurse called with results she stated the enzymes were still slight elevated, and not to worry or stress, keep doing everything I'm already doing, taking the meds, excercising and eating healthy, but I still wonder why are the enzymes still showing up as elevated and not normal. I won't see my specialist until May, I guess I will have plenty of questions then. I try not to stress too much and continue to be positive. I wonder too if this is just normal? Any thoughts out there?

[Hidden in reply to carrot14]

Hello carrot14.

Well it is a well-known fact that one with PBC and on urso may never have what are considered normal LFTs again.

I know mine are still what is considered abnomal but looking not abnormally so these days. (I've been on urso just over 2yrs now.)

It was only after being on urso a yr and having a notso good LFT blood test (Feb 2012) that I did speak to the doctor as he said he wanted me to still go in for the LFTs at 3 monthly intervals as I'd been doing since starting urso. The doctor dropped in that for one with PBC my LFTs were within what is considered a normal range for us.

The nurses I have seen at my GP surgery to take the bloods (rarity for the GPs these days) they don't know a thing about PBC and the same one has asked me not once but twice in 3mths how much I used to drink!!! Saying that too she didn't understand when I told her that I usually have a GGT blood test taken also when I have the LFTs. I had to explain that the hospital doctor dropped in when he wanted me to have repeats done at the GP surgery in 2011 prior to seeing him that apparently the GGT one is that can be missed for one with a liver condition.

[Val02]

Hi You must give URSO a year to work fully. Your results should get better as time goes by.

We all know how difficult it is in the early days - take care.

[LStonelli]

I agree with Val. You have to give the meds more time to kick in. Also there are times when they will go down and could possibly elevate the next. Give it time....things will be looking up.

[Hidden]

It has taken my LFTs 2yrs to actually start to remain stable properly. By that I mean I did start getting some good results in the few months following starting urso Dec 2010. By May 2011 my LFTs started to incline again and Oct 2011 they had inclined a bit more but hadn't reached pre-diagnose LFTs Dec 2010.

Last yr in Feb (2012) they were on the incline still but within 3mths when I had a recheck of the LFTs (May 2012) they had actually decreased quite considerably and were on par with the original good results early 2011 and a couple were better than they had been since my first abnormal LFT Feb 2010. I am not sure, well wasn't at the time whether taking a milk thistle also had helped the LFTs but I am pretty certain it did have some bearing as I stopped taking later last yr and Oct 2012 LFTs were again on the incline. I restarted the milk thistle Dec 2012 alongside the urso (I take 2 x 300mg tablets per day) and last months LFTs showed them to be of a great improvement and they were actually the best I've had so far.

I think for me I'm going to have some kind of cyclical thing going on with the urso where the latter part of the yr I start to incline a bit and then have the decrease again as that is how it is looking like in the last 2yrs.

I personally think that it does need slightly longer than what I have read/heard/been told that urso can take about a yr for some known difference, I'd say it is about 2yrs from taking the urso myself just over that length of time.

If you yourself can see any changes (perhaps you are not feeling as tired as you were previously? I suffered fatigued during 2010 but with a few lifestyle changes and also the diagnose that vanished quite some time ago, unfortunately the itch never has as I get that at night-time still), your LFTs are not elevating further, then I'd not dwell too much on it and concentrate on looking after yourself well as I do (though I thought I did prior to the itch).

I was never a drinker as such, the occasional one but I haven't had any since my first abnormal LFT in 2010 which I do think would help. I hadn't really had anything like fizzy drinks over the years but now I don't have any at all and I check to see if there is any hidden MSG in certain foods as I don't deem that suitable for one with PBC either. I think with a few changes you might be surprised.

[Nykaba in reply to Hidden]

My enzyme levels have gone down significantly over the past year and I have so much more energy than I ever remember having! I just need to be patient! Thanks for the responses.

[bink]

I was on ur so and doing great for 2 years then became jaundice and numbers went up they sent me to Mayo in Jacksonville Fla and I met with transplant Dr. She told me I was falling into a group of people that the ur so just doesn't keep working for and in my case I would need a transplant in 2 ~ 5 years . Now here it is only 6 months and my numbers are back up again ! I just take it one day at a time and pray often . Best of luck ! . Oh the Mayo Dr.s are wonderful and explain things well .

[Nykaba in reply to bink]

Prayers going out to you! How do you know when it is time for a transplant? Will you recieve that at Mayo clinic?

[Jeri]

It took 18 months of Urso, no alcohol, and becoming gluten free to bring All liver panel numbers to hit the normal range.