PSC and Ulcerative Colitis

[Guest guest]

Hi again,

I forgot to mention that my husband has been on Salofalk for a few

years now for the UC and the new doc has just put him on Ursofalk. His

old doc (the one we're seeing on Monday) mentioned putting him back on

Azathioprine but we're not sure if this is necessary (as since coming

off it he hasn't had a relapse of the UC), or if it may do more harm

than good due to it's rare side effect of liver damage. Any comments?

Thanks again Kate

[Guest guest]

Welcome, Kate! We're usually pretty quiet on the weekends, so you may not hear much until Monday.

About the only common denominator among us is that there's nothing in common! Some progress very quickly, some show symptoms and then go asymptomatic for years, some have had PSC for 30+ years and are still doing well. There are two known versions of PSC - small duct (within the liver) and large duct (mostly common bile duct and major biliary tree " branches " ). Large duct PSC is thought to progress faster than small duct.

Write down your questions for the Dr. so you don't forget. You (and all the caregivers) are to be congratulated in your advocacy - it's not unusual for PSCers to want to ignore PSC.

I don't think you can diagnose cirrhosis adequately without a liver biopsy (I'm not a physician), so that's another question to ask. Typically liver biopsies are used to " stage " cirrhosis (I've never had one though). An MRCP will give a good picture, but doesn't always tell the whole story. I don't think a CT or " standard " MRI would be very good for diagnosing PSC at all.

Good questions - keep asking!

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of lavendula9

Hi all,

....He ordered another MRI and a CT about two weeks ago and discovered

PSC and signs of cirrhosis.My internet research tells me PSC is a slowly

progressing disease, how can it be that he is already showing signs of cirrhosis?..

[Guest guest]

Hi Arne,

Thanks for the welcome

It's great to get some first hand info. I didn't know about the

small vs large duct difference so I will be sure to ask the doc.

I forgot to mention that my husband (Brad) did have a liver biopsy

(which is the most painful thing he's ever had) and an MRCP during

the first round of tests and they too came back negative, but now I'm

not exactly sure what they were looking for, although the doc did

mention his suspicions of PSC at the beginning. I know the biopsy

was looking for damage from the Azathioprine and suppose they were

checking for cirrhosis signs but must ask the doc to be sure. I am

an avid list writer so am already on the way to a huge list of

questions to irritate the doc!

I wasn't aware that you could have PSC for 30+ years, then again, I

only know what I've found so far on the internet. Most sites say

that liver failure will occur within 15 years and a liver transplant

will be required and it's pretty scary to hear such definate

timelines, so it's good to hear stories that don't fit into those

perimetres, thanks

I appreciate your response and would be glad to hear any other info

you'd like to share.

Thanks again

Kate

>

> Welcome, Kate! We're usually pretty quiet on the weekends, so you

may not

> hear much until Monday.

>

> About the only common denominato r among us is that there's nothing

in

> common! Some progress very quickly, some show symptoms and then go

> asymptomatic for years, some have had PSC for 30+ years and are

still doing

> well. There are two known versions of PSC - small duct (within the

liver)

> and large duct (mostly common bile duct and major biliary

tree " branches " ).

> Large duct PSC is thought to progress faster than small duct.

>

> Write down your questions for the Dr. so you don't forget. You

(and all the

> caregivers) are to be congratulated in your advocacy - it's not

unusual for

> PSCers to want to ignore PSC.

>

> I don't think you can diagnose cirrhosis adequately without a liver

biopsy

> (I'm not a physician), so that's another question to ask.

Typically liver

> biopsies are used to " stage " cirrhosis (I've never had one

though). An MRCP

> will give a good picture, but doesn't always tell the whole story.

I don't

> think a CT or " standard " MRI would be very good for diagnosing PSC

at all.

>

> Good questions - keep asking!

>

>

> Arne

> 57 - UC 1977 - PSC 2000

> Alive and well in Minnesota

>

>

> ________________________________

>

> From: [mailto:psc-

support ] On

> Behalf Of lavendula9

>

> Hi all,

>

> ...He ordered another MRI and a CT about two weeks ago and

discovered

> PSC and signs of cirrhosis.My internet research tells me PSC is a

slowly

> progressing disease, how can it be that he is already showing signs

of

> cirrhosis?..

>

[Guest guest]

Hi Kate

Welcome to another Aussie. There are a few of you, plus one or two

from New Zealand. Is the Alfred in Melbourne?

You may have seen postings just recently that Penny from Brisbane has

just had a transplant.

You will find so much information and support here.

Best wishes

from the bottom of New Zealand.

> the doc referred him to his colleague at The Alfred (we

> are in Australia).

[Guest guest]

sorry Kate,

I hadn't read this thread, before I asked the question about where you were located.

Ian (52) PSC 89

Hi all,Apologies if I have posted this question already but I can't seem to see it here and I am totally mind boggled from all the new info in my head this last week...My husband has just been diagnosed with PSC. He has had Ulcerative

Colitis for over ten years and during routine blood tests in December 2007, his bilirubin count was high (among a couple other things which I now can't remember).They waited a few weeks to see if it would fix itself, which it

didn't, so he was then taken off Azathioprine but to no avail, bilirubin count remained high. His doc suspected PSC so he ordered an MRI and a couple other things and all tests came beack negative. This was around February 2008.

At a loss, the doc referred him to his colleague at The Alfred (we are in Australia). He ordered another MRI and a CT about two weeks ago and discovered PSC and signs of cirrhosis.My internet research tells me PSC is a slowly progressing disease,

how can it be that he is already showing signs of cirrhosis?Does this mean it is progressing unusually fast? Or has the PSC been overlooked in the past?We are seeing the doc on Monday for some further explanation (my

husband tends to 'tune out' at the prospect of bad news, so I have arranged an appointment to go with him) and I hope to find out more but in case he does the typical 'beat around the bush, wait and see'

thing, does anyone have any information or advice for us?Thank you so much - for having this group and letting me share our story so far...Cheers,Kate -- Ian Cribb P.Eng.

[Guest guest]

Hi ,

Thanks for the welcome

Yes, The Alfred is in Melbourne.

Cheers,

Kate

>

> Hi Kate

> Welcome to another Aussie. There are a few of you, plus one or two

> from New Zealand. Is the Alfred in Melbourne?

>

> You may have seen postings just recently that Penny from Brisbane has

> just had a transplant.

>

> You will find so much information and support here.

>

> Best wishes

> from the bottom of New Zealand.

>

>

> > the doc referred him to his colleague at The Alfred (we

> > are in Australia).

>