Re: Hello all- I am new to the group

[Guest guest]

I've been dealing with chronic eye infections for nearly a year. My

eyes are dry, but not overly so.

The latest infection is in my right eye. There isn't any discharge,

but the eye below the upper lid is inflamed. It's even affected the

muscle. Every time I move that eye or change focus, it's like a knife

into the eye.

I've been on a steroid eye drop, one drop each hour, which is a big

pain. That provides some relief during the day, but isn't practical

at night. Once the infection gets worse, I've been put on oral

prednisone, starting at 120 mg/day and tapering down over a month.

That seems to put the fire out, but the relief only lasts for about a

week or two after I'm fully off the pred, and then it flares up

again...very frustrating. Plus, the side effects of the prednisone

are no fun, either.

There is an association between UC/Crohns and eye infections, but I've

had no symptoms or flareups of UC in months.

The next step for me, if this next round of oral steriods fails, will

be to see a different opthamologist, one who deals with stubborn

infections. I was also told that there could be a rheumatological

component to all of this, and steroid-resistant eye infections are

sometimes treatable using rheumatoid arthritis protocols, which can be

risky for those of us with PSC.

Tom

PSC 1999

>

> My name is Jean and my husband Owen was diagnosed with PSC last

October. I

> have been reading your posts on and off for months. I feel like I

know many

> of you now so I decided I better get on here and introduce myself.

With

> what has been happening recently in the group with Ken, and

others, I

> didn't know if I should write when you guys have more important

things to read

> about than a new member. But today I am back to thinking I want to

say hello,

> and to tell you all that you seem like a wonderful, helpful,

loving, living,

> caring group, and that I am praying for you all! The things you

guys go

> through either yourselves or with your loved ones are amazing. Your

will and

> drive and fighting spirits are inspiring. The information that you

have given

> me is so incredibly helpful! I cannot thank you all enough for

being here and

> informing me about this disease.

> Owen had extremely elevated liver enzymes 7 years ago on a

life

> insurance blood test, but after much testing and finally ERCP, it

was decided he

> did not have it. But in October 2006, he came home from work

jaundiced and

> in a lot of right upper quadrant pain, and again after many tests

and then

> ERCP, it was found he does have it. He is on Urso (only 900

mg/day... think we

> have to talk to his doctor about that) and Cholestyramine. He has

had no

> symptoms since that one bout of cholangitis, until lately.

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.

> I promise that my future posts will not be so lengthy.

> Again, thank you all for your insight and experience and

willingness to

> share your stories.

> Jean

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

[Guest guest]

>

>

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

Hi Marie.....

I recently went to the eye doc complaining of dry eyes and she said

my Lacrimal ducts were alll dried up and believes it is from the PSC.

I am now on Restasis for a few months and then go back for a recheck.

I haven't seeen much of an improvement but I haven't been on them that

long. She said other people with autoimmune disorders develop this

(which PSC may be) you may want to ask your doc about it. GOOD LUCK>

43 PSC 2004, Breast Cancer 2007, Married with one adorable 4 1/2

year old son