Re: Mayo Clinic -Research Study

[Guest guest]

>

> Hello, and welcome to the group. Sorry to hear about your son's

PSC

> diagnosis. Is the research study that you mention the STOPSC

study,

> funded by the Foundation (and recently also by PSC Partners

> Seeking a Cure)?

>

> https://web.emmes.com/study/psc/index.html

>

> Your son's high copper level could possibly be the result of PSC,

as

> it seems that elevated hepatic copper is commonly associated with

PSC:

> __________________

>

> Scand J Gastroenterol. 1995 Dec;30(12):1200-3.

>

> Hepatic retention of copper and selenium in primary sclerosing

> cholangitis.

>

> Aaseth J, sen Y, Aadland E, Fausa O, Schrumpf E

>

> Dept. of Clinical Chemistry, Hedmark Central Hospital, Norway.

>

> BACKGROUND: Previous studies have suggested abnormal copper

> metabolism in patients with primary sclerosing cholangitis (PSC).

In

> the present work the trace element metabolism was studied in a

group

> of 32 patients with PSC. METHODS: Hepatic copper and selenium

> concentrations were determined with a sensitive electrothermal

atomic

> absorption technique. Serum concentrations of copper and zinc were

> determined by conventional atomic absorption. RESULTS: For the

> patient group serum copper values (20.3 +/- 4.5 mumol/l) were

higher

> than those for the control group (14 +/- 3 mumol/l), and average

> hepatic copper concentrations were greater by a factor of four.

Serum

> selenium values were slightly lower, although the average hepatic

> selenium was significantly higher than in the healthy control

group.

> Previous studies have discussed possible toxic effects of

> hepatocellular copper accumulation, which may be accompanied by

> formation of activated oxygen species and depletion of

glutathione.

> In the present study, however, it could not be demonstrated that

the

> concentration of the lipoperoxidation product, malonic dialdehyde,

> was higher than normal in blood. Furthermore, blood concentrations

of

> glutathione and glutathione peroxidase were not abnormal.

CONCLUSION:

> Although a protective effect of the raised selenium concentrations

in

> the liver might be discussed, it is apparent that the copper

> accumulation in the liver cells described here did not induce

> detectable changes in the indices studied. PMID: 9053974.

> __________________

>

> However, another possibility to explain the elevated copper would

be

> 's disease:

>

> http://www.nlm.nih.gov/medlineplus/ency/article/000785.htm

>

> The differences between 's disease and PSC would likely be:

>

> 1. Elevated serum alkaline phosphatase (ALP) and gamma-

> glutamyltranspeptidase (GGT) in PSC ['s disease tends to

cause

> only elevated serum ALT and AST].

>

> 2. PSC is more likely to be associated with inflammatory bowel

> disease (IBD) (our son was found to have ulcerative colitis only

> after PSC diagnosis and a colonoscopy; in many PSC patients IBD

can

> be " silent " and have few obvious symptoms).

>

> 3. An ERCP (endoscopic retrograde cholangiopancreatography) or

MRCP

> (magnetic resonance cholangiopancreatography) would tend to show

> characteristic narrowing and/or beading of bile-ducts in PSC. Has

> your son had one of these procedures to establish his diagnosis?

>

> 4. A genetic test is available for 's disease, but not yet

PSC.

>

> Please let us know if we can answer any specific questions you may

> have, or help clarify any points.

>

> Our son was diagnosed with PSC at age 18, just before going off to

> college. He's now 21 (almost 22) and mostly without symptoms. His

> itching was managed quite well by a prescription of rifampin

> (rifampicin). In addition he takes high-dose ursodiol, asacol,

> vitamin supplements, folic acid, and fish oils. We are thankful

that

> he's had a good time at college, without any major health

probelms,

> and will be graduating next weekend.

>

> Best regards,

>

> Dave

> (father of (21); PSC 07/03; UC 08/03)

>You are the very first person I have talked to about this and you

seem very knowlegable. My son had an MRCP & ERCP to diagnose and is

on ursodial & rifampin plus welchol. Just recently (last week) they

added zinc because of his high copper level. They may check for

's. He is not feeling well at all his last labs were elevated

and we are going tomorrow to re-check them. I am frantic that he is

going to become jaundice again and his prom is next Friday nite. It

is almost a year to the date that he went jaundice. He had the dry

heves today and is coughing. It's only been 6 months since his ERCP

at Univ. Of Penna. I am glad your son is doing well I hope this is

just a reaction to the zinc. He's so young I should be able to

figure out how he got this. And I will so help me God.

Heartbroken in Bucks County. Carole Gluch