Urso

[CathieG]

I was diagnosed in December and since then have been taking Urso. I have severe fatigue and currently signed off work. I read on the tablet information that blood tests should be taken after 28 days to check whether the medication is working. My consultant now tells me it has to be three months before any changes, if there are going to be any will be seen. Anyone have this issue?

I was referred to my employers doctor who says I need tobe at home longer than the two months I was originally signed off for. She knows about PBC so maybe it is three months before improvements can be seen? I never thought to ask her at the time.

Confused.

[Hidden]

Hello CathieG.

Well I was diagnosed with PBC Dec 2010 (the 2nd - started taking urso 3rd Dec). I had been seen by a hospital consultant at the start of Nov 2010 and he relayed the diagnosis to my GP who then asked me to go in and he wrote out the urso prescription as instructed. I received another appointment from the hospital to go in and that would have been around 8wks later.

I was never informed that I should have bloods within a month of starting on urso. The urso was originally designed for use for cholesterol formed gallstones so this information you have read may perhaps have been to check the LFTs in someone who was being treated for gallstones? I know I never read about a time period on the patient information leaflets (PILs) that I have had with urso but there are various pharmaceuticals who do make the urso. I did read that blood checks would be made at intervals though.

I had a good result when I had my first LFTs (the liver function test) following starting on urso and I doubt it would have been as good had I have had blood taken 4 weeks into starting. I found with taking urso that I had temporary side-effects that took several months to ease off and vanish. I had heartburn, a bit of tummy bloating and in that time I thought the itch that I have had since early 2010 (that led to the PBC diagnosis) was worse so at the time wasn't sure if it was a side-effect of taking urso or the PBC. Over time my itch had lessened quite drastically.

I did have fatigue back in 2010. I was over-working in a managerial job at the time and I thought it was due to that. I know for me at some point in 2011 it vanished, just left with the itch and that is all I have now still, 4yrs on as well as abnormal bloods as they are still abnormal but considered fine for one with PBC.

The urso doesn't work for some time in my experience. It seems a very gradual process. I think maybe due to the fact that over time the liver is better able to start to rejuvenate to a certain acceptable level so other symptons may appear to vanish or seem much improved. Unfortunately for PBC, the itch and fatigue is not something that is considered in most case to vanish when one is taking urso.

Meanwhile, what I'd do, all being well with yourself taking urso, then continue to do so, enjoy each day and before you know it, time will have lapsed, you'll have your first blood test from taking urso and can take it from there. From experience again, I always tend to get a bit edgy when the bloods are due, even after all this time but I have long since resolved with myself that the PBC is here to stay and all I can do is continue to get on with living life as you never know what is round the next corner but at the same time, I personally do not want to waste time thinking about how PBC could become as it might never happen.

Our of interest, over the last 4yrs., m y blood results if they were to be put on a graph would make a bit of a slightly bouncy line as they can go up a bit over 6mths and then go down again. They have been like this since 2011. (I used to have bloods done at 3 monthly intervals until the end of 2013 and I now have them every 6 months.)

Hope you'll post back at a later date with how you got on and how you are feeling following your first bloods.

[Lisbeth_66]

Hi CathieG,

I was diagnosed in september, and my first follow-up blood test was in January. I also read the tablet information and wondered.

My specialist only wanted a follow-up blood test after 6 months, and it was myself that went to GP for tests in January. I needed to know if I was getting any better. Couldn´t wait.

All the best to you

[renee29]

I have been on urso one month today and had a blood panel this morning. Im not sure how it usually works but my levels have started going down already.

[CathieG in reply to renee29]

Thanks for letting me know, feel more positive now!

[Rockie]

I take vitamins A, D, E, and K, calcium, Omega 3. Very costly disease