Re: New to Site

[Guest guest]

Hi ;

So sorry to hear about your PSC diagnosis and multiple ERCPs and

stents. You asked if there is anything else that you should be

looking for or at? One thing springs to mind ... have your doctors

checked for elevated serum IgG4? There's a form of sclerosing

cholangitis with elevated IgG4 which seems to respond well to

corticosteroids, and which may be difficult to distinguish from both

autoimmune pancreatitis and PSC. Some examples of articles on this

are as follows:

Nakanuma Y, Zen Y 2007 Pathology and immunopathology of

immunoglobulin G4-related sclerosing cholangitis: the latest addition

to the sclerosing cholangitis family. Hepatol. Res. 37 Suppl. 3: S478-

S486.

http://www.ncbi.nlm.nih.gov/pubmed/17931207

Nakazawa T, Ohara H, Sano H, Ando T, Aoki S, Kobayashi S, Okamoto T,

Nomura T, Joh T, Itoh M 2005 Clinical differences between primary

sclerosing cholangitis and sclerosing cholangitis with autoimmune

pancreatitis. Pancreas 30: 20-25.

http://www.ncbi.nlm.nih.gov/pubmed/15632695

Also have the doctors run any antibody tests to rule out autoimmune

hepatitis overlapping with PSC?

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

> ... They have also informed me that if I run a

> temperature of 101 degrees I must head to the ER right away.

My doctor and I dealt with this by having a course of antibiotics on

hand to take when a cholangitis attack occurred. That and call in for

an immediate appointment when I started the antibiotic. Of course this

was after several attacks, when my doctor was confident I could

recognize one when it occurred and that I typically responded well to

the antibiotics and wouldn't be at great risk of developing sepsis.

> ... I guess that what I am looking for here is if there is anything else

> that I should be looking for or at. I am on the URSO for the itching

> but is there something else maybe vitamin wise that I should be on?

If a vitamin A & D levels have not been tested, I think you should ask

for them to be checked. As posted in msg 100701, Apr 6, 2008:

... vitamin A deficiency is the most common vitamin deficiency in PSC:

nsen RA, Lindor KD, Sartin JS, LaRusso NF, Wiesner RH 1995 Serum

lipid and fat-soluble vitamin levels in primary sclerosing

cholangitis. J. Clin. Gastroenterol. 20: 215-219.

http://www.ncbi.nlm.nih.gov/pubmed/7797830

and they recommend:

" Patients with PSC, especially with advanced liver disease, should be

screened for fat-soluble vitamin deficiencies and supplemented

accordingly " ...

I'll let others discuss other supplements you might want to consider

taking.

Tim R, ltx #3 7/7/07

[Guest guest]

> ... They have also informed me that if I run a

> temperature of 101 degrees I must head to the ER right away.

My doctor and I dealt with this by having a course of antibiotics on

hand to take when a cholangitis attack occurred. That and call in for

an immediate appointment when I started the antibiotic. Of course this

was after several attacks, when my doctor was confident I could

recognize one when it occurred and that I typically responded well to

the antibiotics and wouldn't be at great risk of developing sepsis.

> ... I guess that what I am looking for here is if there is anything else

> that I should be looking for or at. I am on the URSO for the itching

> but is there something else maybe vitamin wise that I should be on?

If a vitamin A & D levels have not been tested, I think you should ask

for them to be checked. As posted in msg 100701, Apr 6, 2008:

... vitamin A deficiency is the most common vitamin deficiency in PSC:

nsen RA, Lindor KD, Sartin JS, LaRusso NF, Wiesner RH 1995 Serum

lipid and fat-soluble vitamin levels in primary sclerosing

cholangitis. J. Clin. Gastroenterol. 20: 215-219.

http://www.ncbi.nlm.nih.gov/pubmed/7797830

and they recommend:

" Patients with PSC, especially with advanced liver disease, should be

screened for fat-soluble vitamin deficiencies and supplemented

accordingly " ...

I'll let others discuss other supplements you might want to consider

taking.

Tim R, ltx #3 7/7/07

[Guest guest]

,

I understand where you are coming from with the stent. I also

had " remove " changed to " replaced " and at the time I felt how you are

feeling now. It seemed easier to go into each ERCP thinking that it

might be my last. Once I adjusted to that replace word I realized I

was better off getting my tune-up every few months than I would be if

I had a closed duct and was yellow. Yellow is not my color.

I would certainly ask the dr. why he said 4 replacements and then you

would need to be listed. I have had 8 changes over the last 19

months and am light years away from needing to be on a list. I'm

pretty sure there are others here who have had stents for much longer

than me.

Darcy

the ERCP my doctor made the comment that he would

see me in June to " replace " the stint. All the other times he had

said he would see me to " remove " the stint.

This was a little scary for me and really ticked me off since I truly

believed that the Bile Duct Disease could not possibly be that bad.

However, it is. My hepatologist has told me that I am looking at a

total of four stints then I will have to go on the transplant list.