Re: Sjogrens Syndrome

[Guest guest]

Vikki,

Sorry I can't give you any info at this time. On Monday, my rheumy told me I

have Sjogrens and added Plaquenil to the ever-growing list of medications.

Is your eye situation from the Sjogrens or medication? The warning for the

Plaquenil says to see your eye doc twice per year.

Prayers for your health,

Suzanne

[Guest guest]

Vikki,

I have been told that I have sicca symptoms, but nobody has gone as far

as giving me a Sjogren's syndrome diagnosis.

My ocular symptoms are much worse than my oral symptoms, but I haven't

experienced blurring. Dryness and pain are my main complaints. I wear my

contacts less and use eye drops (Refresh) when necessary.

The Sjogren's Syndrome Foundation Web site is very good and their book,

" The New Sjogren's Syndrome Handbook " is excellent:

http://www.sjogrens.com/

http://www.sjogrens.com/syndrome/treatment.html

[ ] Sjogrens Syndrome

> I finally made an appointment to see an eye specialist yesterday -

they got me in within 3 hrs! My complaint was blurred vision that

occasionally would get tremendously bad. It turns out that I have

Sjogrens, and my Dr. has a " particular interest " in this disease! Looks

like I called at the right time to the right place! Even the nurse was

sympathetic - she (coincidentally) has Sjogrens too!!! I know all the

basics - dry eyes, dry mouth, etc., and I've done a fair amount of

internet research, but I was wondering about your experiences with this.

Could someone share?

>

> I would also like to hear about treatment options. My dr. didn't

really go into that too much. He put me on two eyedrops for now;

Refresh Endura 4x a day and Tears Naturale Free every 1-2 hrs. We'll

see how they do at my next appt.I see him again next month, when he is

going to do a sensitivity test (he said I have lost quite a lot) and a

glaucoma test (pressure a little high). Does this sound right for a

first appt.?

>

> He also warned me that as my eyes heal a little with the drops, some

of the sensitivity will return and I'll actually " feel " worse. Was this

your experience?

>

> As you can see, I'm full of questions. FYI - I also have RA and

possibly fibromyalgia. I'm looking forward to hearing about your

experiences.

>

> Vikki

[Guest guest]

I have it too. Mine seems to go in cycles -- for a long time it will be almost impossible for me to read for more than 30 minutes and some days my eyes will be so dry that they burn all the time. I use all the different eye drops on the markets, including the gels, but nothing lasts very long. The ones that aren't gels only give relief for about ten minutes. However, then I'll go for a long time with virtually no difficulty at all. It's been several months now since I had my last severe bout. Drinking a lot of water does seem to make a different, and sugarless gum and candy helps with the mouth dryness.

----- Original Message -----

From: a

Rheumatoid Arthritis

Sent: Saturday, September 24, 2005 10:18 AM

Subject: Hi Kenajean

Hi there...I was just diagnosed with Sjogrens Syndrome. My dr first told me to drink lots of water and chew on sugar free candy. But that didn't really help me much. He has now prescribed evozac for me to take 3x a day. It seems to work for me. The other med is salagen.Hope this helps you.Hugs..a

[Guest guest]

When I went for my last eye exam, knowing I had sjogens, the doctor said my eyes were as dry as she had ever seen them. She gave me a prescription for restastin, which are prescription eye drops and they feel like a liquid gel. They made my eyes too goopy but thats just me. My favorite is patanol. It is supposed to be for irritation but it feels great, not too lubricating but not under either. Liquid tears are good over the counter. I found that simply wiping my eyes with some warm water on a face cloth helps also. There is also a saline solution which contact wearers use that works great. Hope that helps, Yours, Deborah