Re: Hello all- I am new to the group

[Guest guest]

Welcome to the group Jean and Owen. First glad you found the group.

Please don't ever apologize for long posts or think that what you are

going thru is insignificant. Finding out you have psc or your loved

one does is a very significant event.

Does Owen have Ulcerative Colitis too?

Many psc'ers have UC too. Often when you have one autoimmune disease

you are prone to having problems with others. I know for people with

UC they can have iritis (sp?) too. I would not be surprised if that

was not true for people with psc too.

I never personally have had iritis.

Good Luck to you and your husband.

beth ann dalrymple

uc psc 1978, ltx 1/2006

[Guest guest]

Hi Jean;

Welcome to the group. Sorry to hear about Owen's PSC and eye

problems. Arne has already pointed you to a really good resource on

eye problems associated with ulcerative colitis. Some of these have

also been found to be associated with PSC. Three possible

explanations would be uveitis, sicca complex (Sjogren's syndrome), or

vitamin A deficiency.

___________________

Am J Ophthalmol. 2007 Mar;143(3):534-6.

Primary sclerosing cholangitis and uveitis: a case series.

Hoang LT, Lim LL, Walton RC, Goldstein DA, Chalmers B, Rosenbaum JT

Casey Eye Institute, Oregon Health and Science University, Portland,

Oregon 97239, USA. hoangl@...

PURPOSE: To report the cases of six patients with primary sclerosing

cholangitis and uveitis. DESIGN: Retrospective observational case

series. METHODS: Two index cases were identified from the Uveitis

Clinic of the Casey Eye Institute, Oregon Health and Science

University and another from the Portland area. Additional cases were

identified through a web-based survey of members of the American

Uveitis Society. RESULTS: Three males and three females were

identified. Five of six patients were diagnosed with uveitis prior to

primary sclerosing cholangitis. Four had unilateral eye involvement.

Five had insidious onset. All had persistent duration. Clinical

course was chronic for three, recurrent for two, and chronic-

recurrent in one. Vitreous inflammation was prominent in five.

CONCLUSIONS: Although the number of patients who were studied is

limited, there appears to be an association between primary

sclerosing cholangitis and uveitis. Further studies are required to

confirm such an association. PMID: 17317411.

___________________

Am J Surg. 1984 Jun;147(6):822-6.

Sclerosing cholangitis, chronic pancreatitis, and Sjogren's syndrome:

a syndrome complex.

Montefusco PP, Geiss AC, Bronzo RL, Randall S, Kahn E, McKinley MJ

The disease complex of chronic pancreatitis, sclerosing cholangitis,

and Sjogren's syndrome seems to be a well-defined entity with an

autoimmune cause similar to that which occurs in primary biliary

cirrhosis. Treatment depends on the component of primary sclerosing

cholangitis and, more particularly, on the degree of extrahepatic

involvement. PMID: 6731702.

___________________

see also:

PANCREATITIS, SCLEROSING CHOLANGITIS, AND SICCA COMPLEX

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=260480

___________________

See Dry Eye Syndrome:

http://www.nlm.nih.gov/medlineplus/ency/article/000426.htm

for further explanations of vitamin A deficieny and Sjogren's

syndrome involvement in dry eye syndrome.

Note that vitamin A deficiency is commonly associated with PSC:

___________________

J. Clin Gastroenterol. 1995 Apr;20(3):215-9.

Serum lipid and fat-soluble vitamin levels in primary sclerosing

cholangitis.

nsen RA, Lindor KD, Sartin JS, LaRusso NF, Wiesner RH.

Mayo Clinic, Rochester, MN 55905, USA.

We reviewed the initial lipid and fat-soluble vitamin levels in 56

patients with primary sclerosing cholangitis (PSC) enrolled in a

randomized, placebo-controlled trial evaluating ursodeoxycholic acid.

We also evaluated lipid and vitamin levels in a group of 87 patients

with advanced PSC being evaluated for liver transplantation. Of the

patients entering the therapeutic trial, 41% had total serum

cholesterol levels greater than the 95th percentile, whereas only 20%

had high-density lipoprotein cholesterol levels above normal, and

only one (2%) had an elevated triglyceride level. Total cholesterol

levels were correlated with serum bilirubin levels and were lower in

early versus later histologic stages (206 +/- 61 vs. 248 +/- 79, p =

0.04). Of the 87 pretransplant patients, 29% had elevated serum

cholesterol levels and 17% had elevated serum triglyceride levels.

Total serum cholesterol levels correlated inversely with total serum

bilirubin levels in this group. In patients in the therapeutic trial,

vitamin A deficiency was seen in 40%, vitamin D deficiency in 14%,

and vitamin E deficiency in 2% of those tested. More prominent

deficiencies of fat-soluble vitamins occurred in the pretransplant

group of patients, with 82% deficient in vitamin A, 57% deficient in

vitamin D, and 43% deficient in vitamin E. We conclude that

hypercholesterolemia and fat-soluble vitamin deficiencies are

frequent in patients with PSC and are more common with more severe

disease. Patients with PSC, especially with advanced liver disease,

should be screened for fat-soluble vitamin deficiencies and

supplemented accordingly. PMID: 7797830.

_____________________

So it might be worth checking whether Owen's vitamin A level is low?

I hope this helps,

Best regards,

Dave R.

[Guest guest]

I have not heard that PSC causes eye problems, yet I have had them. It's not

as bad now as it was, but I continue to do what the opthamologist told me to

do: 1) wash my eyes once a day with 's Baby Shampoo (it's tearless);

and twice a day add a drop of LiquiTears to each eye. Actually, it would be

better to add the LiquiTears every 3 hours, but that's not so practical for

me. But I do it mornings and nights. It has helped with the pain I would get

in my eyes as well. I almost never get that now.

I would suggest you see an opthamologist. She also plugged up the tear

ducts, so my eyes don't get so dry.

-Marie

Something is going

>on with his eyes. They keep getting infected. The eye doctor thinks that

>the

>PSC may be causing dryness, making him more prone to infection since he

>wears contacts so much. Now he is back on glasses only, & more antibiotic

>eye

>drops, and we will see if this stops this. My question is, does anyone

>else

>experience eye problems with PSC? We see Dr. Flamm at Northwestern in

>Chicago

>on July 23rd, but I decided to see what you guys think.

>

_________________________________________________________________

http://newlivehotmail.com

[Guest guest]

I have eye problems also and was told that is was part of the PSC. I have

really dry eyes and they are easily scratched at night during REM. I often

wake in the middle of the night with pain in one or both of my eyes. This

has reduced since I started using an oitment in my eyes just before I go to

bed. I use to wear contact and found that my eyes would dry our much faster

with them. I have stoped wearing them. Hope this information help.

RE: Hello all- I am new to the group

>

> I have not heard that PSC causes eye problems, yet I have had them. It's

> not

> as bad now as it was, but I continue to do what the opthamologist told me

> to

> do: 1) wash my eyes once a day with 's Baby Shampoo (it's

> tearless);

> and twice a day add a drop of LiquiTears to each eye. Actually, it would

> be

> better to add the LiquiTears every 3 hours, but that's not so practical

> for

> me. But I do it mornings and nights. It has helped with the pain I would

> get

> in my eyes as well. I almost never get that now.

>

> I would suggest you see an opthamologist. She also plugged up the tear

> ducts, so my eyes don't get so dry.

>

> -Marie

>

>

>

> Something is going

>>on with his eyes. They keep getting infected. The eye doctor thinks

>>that

>>the

>>PSC may be causing dryness, making him more prone to infection since he

>>wears contacts so much. Now he is back on glasses only, & more

>>antibiotic

>>eye

>>drops, and we will see if this stops this. My question is, does anyone

>>else

>>experience eye problems with PSC? We see Dr. Flamm at Northwestern in

>>Chicago

>>on July 23rd, but I decided to see what you guys think.

>>

>

> _________________________________________________________________

> http://newlivehotmail.com

>

>

>

>

>