Re: Just told I most likey have PSC

June 21, 2007

Jed

I'm sorry to hear that you may have PSC, but I'm glad you found this

support group. Ask questions, someone will answer. I don't know as

much as some of the people here, but I will tell you my experience.

It's hard to determine how long it may be until you need a transplant.

You may never need one. My husband was diagnosed in 2000, had his

colon removed because of UC in 2004, and was put on the list for a

transplant in 2005. He received his transplant November 18, 2006.

Other people have had the disease much longer and still do not need a

transplant.

As your liver disease progresses, they will monitor your blood work

closely. They use a score called a MELD score. You can read about

this on line. Transplant centers are all different, but received

his transplant with a MELD of 23.

But, you are no where near thinking about these types of things. You

are just adjusting. Your doctors will look at the ERCP and probably

start you on Urso or Actigal. This is a drug to help thin the bile and

make it easier to go through your bile ducts.

Good luck with your doctor's appointment.

wife of

UC & PSC 2000 J pouch 2004 TX 11-18-06

June 21, 2007

Uh sorry, Jake, not Jed (notice my post about closing on the house)

I'm a little crazy right now. Sorry about that!

June 21, 2007

You have not lost it, just yet. It said Jake one place and Jed in another.

Hang in there!!

>>> " Peace " 6/21/2007 10:36 AM >>>

Uh sorry, Jake, not Jed (notice my post about closing on the house)

I'm a little crazy right now. Sorry about that!

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June 21, 2007

had a p-ANCA for 2 years and due to recent

> high liver enzymes my doctors are telling me I most likely have PSC.

My husband Bob is the PSC patient and it looks like we will be making

arrangements to come to Mayo. We were there last in 1999 when Bob was diagnosed

and he has been able to work full time and had a miriad of medical issues. I

hope to meet you if we come to Rochester.

What is p-ANCA?

dee

June 21, 2007

p-ANCA is an anti-body that is present with many types of Vasculitis,

one of which is Wegener's Disease. I've had the p-ANCA for 2 years but

the docs were unable to say what it means. Normally it's a good sign

you have WG's, but i did not have any physical signs in my body. I

spoke to my doc today and he tells me that the p-ANCA can also be given

off in someone who has PSC. I've also been told by doctors that a p-

ANCA can be given off if you have spotty dishes in your house

(seriously). So now I'm not sure if I have PSC, WG, or both..

Thanks for the help , it's a hard time right now for myself and my

family. Sorry for the name confusion. My real name is Jed, I just don't

like putting that on the email right away.

June 21, 2007

And here I thought I was the only one who didn't know what p-ANCA is.

Good to know that no one knows. hahaha

wife of

UC & PSC 2000 J pouch 2004 TX 11-18-06

June 21, 2007

My doc also monitors p-anca. To be honest

I do not really know why…

Chaim Boermeester, Israel

I found this after a google search.

Abstract

Antineutrophil

cytoplasmic antibodies (ANCA) have been identified in the serum of 50-80% of

ulcerative colitis (UC) patients. UC-associated ANCA yield a perinuclear

staining pattern (pANCA) with alcohol-fixed neutrophils. More recently, pANCA

have been detected in the serum of patients with primary sclerosing cholangitis

(PSC) and other autoimmune liver diseases. Up to 70% of PSC patient sera and up

to 92% of sera from patients with well-defined type 1 autoimmune hepatitis

(type 1 AIH) were found to express pANCA. Such expression by patients with PSC

and type 1 AIH raises questions conceming the relationship of these pANCA to

each other and to that of UC. Differences and similarities in pANCA

characteristics are found among the three diseases, suggesting the use of pANCA

to define specific disease subgroups. Our recent finding that the UC-associated

pANCA reactive antigen was localized within the nuclear domain prompted an

examination of whether DNase treatment of neutrophils would alter antigenic

recognition by the pANCA of UC, PSC, and type 1 AIH. While loss of antigenic

recognition after DNase digestion of neutrophils was a dominant feature of the UC-associated

pANCA, the majority of PSC and type I AIH pANCA recognized cytoplasmic

constituents. These results further support the feasibility of defining and/or

distinguishing disease subgroups based on the characterization of respective

pANCA.

From: [mailto: ] On Behalf Of Jake

Sent: Thursday, June 21, 2007

18:42

To:

Subject: Re: Just

told I most likey have PSC

p-ANCA is an anti-body that is present with many types

of Vasculitis,