Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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Sjogren's specialist

edeebee
edeebee

Just returned from an appointment with my general practitioner.  Between my Opthamologist, Rheumatologist and GP they have conferred and recommend that I see a Sjogren's specialist at the University of Pennsylvania.  I have chronic uveities, have already had cataract surgery and lens implants.  I have permanent tear duct implants in both eyes (couldn't believe how much they helped!)  Now I have developed MGD (Mebomian Gland Dysfunction) - I've had an in-office gland treatment and at home I try as much as possible to put hot compresses on my eyes for 10 minutes at a time 4 times a day.  I'm definately losing my eyesight and it's breaking my heart.  I'm a musician and an artist, plus I love to read.  I like the doctors I have (also have an ENT for dry mouth and sinuses and Dermatologist for chronic rosacea.  But they don't feel they can proactively help me beyond what they have.


Any comments, suggestions or advise?

doodlebug25
doodlebug25
Definitely go see the specialist. There are medications soon to be approved for Sjogrens (humira being one). They may also have research medications or other research studies you may qualify for. And there may be additional testing or guidance for monitoring for additional problems seen with Sjogrens.
I am so sorry you have had such problems with your eyes, and especially with your interests and activities. Good luck.
BlueSky
BlueSky
So sorry this is happening to you. It must be scary. I have the permanent plugs too (one fell out last week and I'm waiting to get an appt). I think you should see the specialist too, and I hope they have a treatment for you. Please update us when you do.
depotblue
depotblue
thoughts and wishes. I had the plugs. they were great but they would not stay in and required monthly appointments in my case to re-insert. I am now on restasis. I have an MD at an eye and ear teaching hospital that I go to. glad you have your appointment lined up at U Penn. maybe they will have a different take on things than the local eye clinic.

depotblue
edeebee
edeebee
Thanks for the advice and well wishes. I guess it's just the thought of traveling to Philly plus more tests! Because I'm sure they'll do their own bloodwork, etc there. But, I do want to feel better and do whatever I can for my eyes.
KYork
KYork
I would go to the specialist for sure. I am wondering why do the doctors wait until things get bad before they let you know there are specialist on the problem. My brother has scleroderma(another immune disorder) and now that it has hit his heart and not doing well they let him know there is a specialist for this disease. Why not tell us in the beginning. My primary doctor sent me to a Rheumatologist after my diagnoses but now he sent me back to my primary and will see me every two years. I do see my eye doctor every six months. I have been on restasis for 2 years and tear duct plugs. He told me they are so dry that they are only trying to keep me comfortable. This diagnoses is still new to me. So far it has affected my eyes and my saliva.
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