I've been on Urso for 9 weeks and I've been fortunate to have good results already:
GGT - from 750 to 164
ALT - from 450 to 35
ALP - from 513 to 193
Cholesterol - from 375 to 28
(Fibroscan 10.7 - not retested)
Here are my questions:
1. How long until Urso "bottoms out" and you stop getting improvements?
2. Would you be likely to get side effects as time goes on? I am now feeling a little sick after I eat which I didn't feel in the first few weeks.
3. I am AMA-negative and I haven't had a biopsy. Considering the good results with Urso, Is there any possibility that I DON'T have PBC? I understand that Urso can be used for gallstones (which I have) but I read that it might take at least 6 months for gallstones to be dissolved using Urso.
4. I understand that Urso doesn't cure PBC, but that it stops the progression of PBC? Is this true? And if so, what does "progression" actually mean? Does it mean that the linings of the bile ducts will continue to to be damaged? And does it mean that fibrosis/cirrhosis can continue to develop in the liver? Or none of the above?
5. What sort of follow-up do I need from my consultant? How often do you see your consultant and what tests need to be repeated?
Thanks in advance, everyone, for your kind attention.
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tinypixie
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I got good results from my first LFTs after being on urso for 2mths. I was diagnosed in Dec 2010.
My LFTs then started to slow down in dropping after a year on urso. My LFTs and the GGT tend to bounce up and down and I get 6 months of good results and 6 months where they have gone up a bit. This has been the norm for me now since 2012.
I cannot answer your first question really. Depends on each individual it seems. It isn't said that PBC patients can get normal LFTs on urso as it is isn't expected but some do return to normal. It can apparently take years for LFTs to return to normal also. Mine seem stuck but are said to be OK for one with PBC.
I think with PBC if it is progressing slowly then it is probable that we might develop further symptons but it seems so varied and even someone who has hit a cirrhosis stage with PBC can experience little symtpons and look quite well it is said.
For me I started out in early 2010 itching 24/7. Over time with urso that has changed and I tend to be a night time itcher as annoying as it is it isn't as it was back during 2010. Back in 2010 I did have fatigue that I never really thought much of due to working really long hours over a long period of time but that vanished at some point during 2011. I get tired at times later in the day due to not sleeping very well at night due to the itch.
Nausea can be a sympton with PBC. It is said that eating little and often can help in PBC. I find myself I can eat like a King at breakfast time, then eat like a Queen at lunch but come the evening meal, have to say I am the pauper then as I find I often don't feel very hungry. I put that partly down to my age now (I am not far off 52) and the fact that I am most active in the earlier part of the day. I also dont' tend to eat much at all after the evening meal (I have an apple these days, said to help with digestion (I did read dyspesia) and the odd time I have encountered heartburn it seems to do the trick plus sometimes make a cup of night time drink like Horlicks in the UK.
If you have been diagnosed with PBC then it won't go away. I used to be under the illusion back in 2011 that if the itch vanished and I was feeling fine then I'd have got rid of the urso but I accepted with more time that it is something I am stuck with for the rest of my life.
The only gallstones urso is tended to be used for is cholesterol as urso can help with the breaking up of cholesterol in the system so in turn it can apparently help dissolve any gallstones that are made up of cholesterol as gallstones can be made of other components.
I think taking urso improves digestion as the bile helps break down fats in particular. By doing this it is more than likely causing the liver less stress so it can improve and even start to repair if we aren't in a more dangerous state of PBC. I think this is where the progression part comes in, a liver that is much better may lead to the PBC slowing down somewhat.
I do believe that PBC can halt and may or may not ever continue to progress. I know back in 2010 when I was having the LFTs at intervals prior to diagnosis I noticed when I got my readings of the bloods after diagnosis, 3 months prior to seeing the consultant at the hospital the last ones taken at the GP actually showed a natural drop in the LFTs and that was without any urso as I'd not been diagnosed at the time nor had it been suggested I might have PBC. I was tested for antibodies the day I saw the consultant who found me to have high tire of the AMAs but negative for ANAs.
I would say that at the moment I am probably in a better condition than I was during 2010 pre-diagnosis. I don't tend to bother about knowing any stages of PBC nor has it ever been suggested I have a biopsy to stage this as it is said can be done (I have my own opinion there as to the accuracy).
I just get on with living my life as best I can. There are certain things I know I won't do now due to having PBC (I know I couldn't for instance sit through a movie at the cinema as I'd be fidgeting all the time and feeling prickly) but they are of no major significance.
I only saw my consultant after diagnosis twice. I went for the first appointment 2 months after starting urso and then negotiated to go 6 months later as opposed to his 3 months (he gave me an envelope with blood tests written on it for the GP to do at the 3mths mark so he would have them at my 6 month visit). When I returned to see him I told him for what I was going for at the time I would rather not bother. My LFTs had improved immensely in that period (just under a year) and I was feeling much much better. He agreed with me at the time to discharge me back to the GP with understanding that in future if needs be I'd return to see him. So far I've been OK for the last 4yrs.
The only blood checks I have as standard for PBC are kidney, bone and liver plus the GGT and a full blood count each time. I have had others like a ferritin one as I was a bit low in iron a couple years ago but that was resolved with short course of iron tablets and the cause was at the time nosebleeds (I went to ENT for a tiny graze that was cauterised a few times). I also had one for kidney that I cannot recall the name of it now but it is to see how well the kidneys are working and got a percentage. It is natural for a decrease as we age but mine was said to OK.
I would expect a doctor would use the bloods we have as standard to check for other things if any others are abnormal.
Wow those are excellent readings.I so wish mine could be like that. You definitely doing something very right. Well done. Maybe you dont have PBC and just the gallstones. I only speculate, surely your dr could give you the answer.
Chynablue, I've read that raised cholesterol in PBC patients is a result of the liver trying to make more bile when the normal bile is not available, as in PBC. I've also read that the raised cholesterol in PBC is not the same type as that associated with heart disease. Anyway, I hope it works for you, too.
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