I know this may be hard to say but I was recently diagnosed with potentially having small duct psc. My blood tests for alt alp were both double what they should be. Ggt was 5 times what it should be.
They put me on urso and my gp tested me 4 days later as the gastroi missed some bits.
In just 4 days my alt alp were back down to about half of upper limit and ggt was down to just over double upper limit (apparently it has a long half life in the blood) .
Is it normal to react that quick and well to urso?
Interestingly, I have SD PSC too but wasn’t put on urso as I was told it is more effective treatment for classic psc. I would say that whatever the reason your numbers have come down, it’s a good thing. I have read that numbers within 1.5x the upper range generally predicts a good clinical outcome.
Yes I have heard the same. Although my diagnosis is still in question. Waiting to see a specialist.
For this, you need to look at half life of these liver enzymes, which represent the concentration in your circulation reduces to half of its original state, if no new enzyme is produced.
Half life for ALP is about one week, and ALT is about 47 hrs. So you might need to thank something else, many possibilities. I’d suggest don’t pay too much attention to these short-term changes. But a better liver function test results is always a good thing.
I am taking Urso since 2001 years (since I was 18) and reacted well on it and never increased the amount of Urso. I had never any ups since 2001 until this year and thus I had my very first ERCP one week ago.
But in conclusion, for me Urso helped a lot.
Do you have large duct or small duct? I’m assuming large if you had an ercp?
You’re doing well then!!!
I have small duct PSC and the Urso brought my labs down tremendously. I have been on this for 10 years. Have tried to decrease the amount and instantly labs went up. So I think it is worthwhile to at least try.
Have you had many problems with small duct? Haven’t found much info or people tthat have had it
Urso brought my labs down to normal (except for GGT) on 900mg a day. I reduced the dose to 600mg and the labs started to creep up so am back on 900mg a day.
Did your ggt not drop at all?
My GGT is always high. After taking urso my GGT dropped from 471 to 117 u/l and the range should be between 9-36. It crept up to 197 on 600mg of urso so will see whether it comes down again now I’m on 900mg.
I do fairly well. Find that I do better when I eliminate certain foods from my diet such as dairy and gluten. This has improved my labs significantly. This is just my own little
But did raise eyebrows from my hepatologist. Never had colon issues which is common with this disease. Not a one size fits all disease for sure. How bout yourself?
I responded to email. So this may be duplicate. I have done very well with symptoms for many years. Tried to decrease dose of Urso once but symptoms started to appear when bilirubin went up so back on my high dose. Labs are usually about the same with ALP running around 250 to 300. It has been much higher in the past! I have managed to bring it down even lower like under 200 when I go dairy free and gluten free.(My own little experiment, but did raise eyebrows of the doctor.) I don’t have Colon issues thankfully that go along with this disease.
I have only just had the possible diagnosis. Have no issues apart from high enzymes which have been reduced to normal within 4 days of urso. Eat what I want and drank alcohol until recently (since having possible diagnosis). Waiting to be referred to a specialist as my gastro had little knowledge of small duct psc. My bloods aren’t that typical for psc
My blood’s stayed at the same level when I wasn’t taking anything just a little high. 4 days of urso and they are all below normal range apart from ggt but that halved in that time
Don’t sweat the GGT. The level that I learned that got my doc’s attention was the bilirubin. That is the best indicator of a liver that needs immediate attention. I paid some attention to the ALP also, but my doc never said anything about that.
My bilirubin is never over about a third of the normal upper limit. Usually around 4-6 normal upper limit is 21 on my tests
Dane, do you know how many pscers would sell their kids for a normal bilirubin like that!