Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Published: June 04

I was just recently diagnosed with Sjogren's Syndrome about 5 months ago. I started having extreme eye dryness about 2 1/2 yrs ago, and my eye doctor told me I was on the verge of corneal abrasions from wearing rigid gas permeable contact lenses. I felt like I had "gritty eyes" all of the time, but thought it was related to allergies. I stopped wearing contact lenses, and that helped some. I was placed on Prednisone eye drops, oral antibiotics, and Restasis eye drops with some improvement. My eye doctor wanted me to see my primary physician to have some labwork done to test for Sjogren's. My primary physician proceeded to perform labwork, which she said was "normal" and that I did not have Sjogren's Syndrome. Nearly 1 1/2 yrs later, I started with so much fatigue, that I literally could almost not function. At that time, I also developed severe joint pain in my knees, ankles, and hands. The pain in my hands was so severe, that I could not hardly hold or grip anything, and I had to prop them up on a pillow with heat packs on them. My primary physician (now in another state) sent me to a rheumatologist, and the only labwork that was slightly elevated was my ANA, sed rate, and C-reactive protein. My "rheumatoid factors" were normal on the bloodwork. The rheumatologist wanted to refer me to an ENT physician, and a lower lip biopsy was performed. That was conclusive for the Sjogren's Syndrome. I have had other things that have happened with my health over the past 10 yrs total, and I feel that they are all probably related to the Sjogren's Syndrome(hindsight). My skin is extemely dry; my eyes are dry; my mouth is dry. My eye doctor 2 yrs ago, placed punctal plugs in my tear ducts, but they have fallen out since that time. Restasis seems to continue to help. I was placed on Plaquenil about 3 months ago, and my rheumatologist said it would take about another 2 months for me to start noticing some improvement with symptoms. I have started with severe skin itching that "comes and goes", and a reddened, slightly raised rash on my lower legs since starting the Plaquenil. My rheumatologist thinks it might be an allergic reaction developing from the Plaquenil. I am scared to have to even think about having to start another medication, since most of the other ones have more side effects, and problems that could develop from taking medications. I do have moderate amounts of headaches. Some days I feel OK, and some days not. I have learned to listen to my body, and rest when it tells me to. I am only 43 yrs old, and I feel like I am 90 yrs old some days. I have started with the "classic butterfly rash" on my face, and wondering if I might have Lupus along with the Sjogren's. Only time will tell. The other comments here have shown me I am not alone.

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Published: June 03

In 1990 I believed to have pink eye that just never went away. I went to an eye specialist and he realized I was producing so few tears his tester wouldn't even get wet. I was referred to the Mayo clinic in Rochester in 1992, they could not tell after a week of testing what was wrong and said it would be interesting to see what developed. I suffered in silence until 1995 when I was introduced to Lacrisert. These are worn daily in the bottom eyelid and produce tears for me all day long. No eye drops needed. In 2005 my saliva glands started to dry up and now I take a medication called Evoxac to produce saliva. This is very helpful as without it I can not communicate. My lips stick to my teeth and pronunciation is gone. I believe it is starting to affect my air way now which is really not good since I have smoked most of my life. There is help if we can find the right doctors. If you haven't tried the Lacrisert or the Evoxac ask your doctor. I seriously wouldn't be here today if it weren't for these two products. The pain was so intense a body couldn't stand it. Sensitivity to the sun is now becoming a major problem also. I can't keep my eyes open without sunglasses and rashes on the body appear after exposure.

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Published: June 03

It took 6-7 years to diagnosis since my only symptom was occasional paranoid gland swelling. It would happen while eating (or about to eat) and the extreme swelling would develop within 1-2 minutes. The swelling would go down after a few hours. The final straw was when I swelled up after eating an olive and it stayed swollen for 5 days. I could not open my mouth to eat or drink unless I took a Vicodin. I then insisted my doctor run blood work for Sjögren's and I was correct. Since my diagnosis, I do notice I have very dry lips and skin and the Placniquil makes me not heal when I injure myself.

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Published: May 29

I have had Sjogren's syndrome for a long time. My eye doctor is the one that thought there was something wrong. My eyes were very dry. He had me see a doctor named who specialized in Sjogren's syndrome. At the time I had know idea what that was and had never heard of it. The doctor tested me and told me I had it. My mouth was always dry, my eyes were dry, but I never thought much about it. As I am getting older, it has gotten a lot worse. My eyes are so so bad. They always hurt. They closed the ducks a couple of years ago. I'm always putting drops or ointment, into my eyes. Sometimes I just want to sleep because I can't stand the pain. I really hope and pray know one has to suffer like I do with my eyes to the point were I want to cry. And there doesn't seem that there is anything that can be done. I have been to four top doctors, and they just don't know anymore how to help. My dry mouth is easy: I always carry a drink, use special tooth paste and mouthwash. So that helps.

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Published: May 23

The doctors didn't know what was wrong with me. I was swollen all over for months. When all the swelling went down, my saliva glands were enlarged and I had incredible thirst. My mouth was not producing enough saliva. My eyes also became red and although I used allergy Visine and other products to get the redness out, it always came back. There were headaches and I lost 80lbs in about seven months. It was incredibly scary. Now we knew that this was Sjogren's syndrome. It's not that bad really, considering that I now have to use special toothpastes and special mouth washes. Eye drops help with the redness and I live a very close to normal life. I think the worst part is the headaches and treating that part of the syndrome.

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Patient Comments

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Sjogren's Syndrome - Symptoms Question: What symptoms and signs did you experience with Sjogren's syndrome?
Sjogren's Syndrome - Prognosis Question: What is the prognosis for your Sjogren's syndrome?
Sjogren's Syndrome - Treatment and Diet Question: What treatment has been effective for your Sjogren's syndrome? Have you made any dietary changes, and have they been effective in managing your Sjogren's syndrome?

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