Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Published: July 09

I was diagnosed with Sjogren's syndrome about two, almost three years ago, and I just recently have started having a lot of problems with my symptoms. I am extremely fatigued and weak. My eyes always look like I've been crying because they get so red and dry. I try to exercise and stay active, to help with the arthritis pain, but I am just 36 years old, and it's hard not to get down because I used to be so active and athletic. I have a family history of autoimmune problems working against me too.

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Published: July 02

My mom has Sjögren's Syndrome (I believe it is secondary since she also has RA). She suffers unbelievably from dry eyes, pain, dry eyes, and sensitivity to light. She is 77 years old. Restasis is one medication she recently began taking but it doesn't seem to be helping. Fresno, California

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Published: June 26

I have 3 autoimmune problems: Crohn's, Sjögren's and Fibromyalgia. The Crohn's has been with me the longest...36 years. Fibromyalgia and Sjögren's appeared about the same time and both are awful. The dry mouth is a 24/7 constant, awful irritant that is getting increasingly worse. Biotene does nothing. Having cotton balls in your mouth all day, every day with no hope in sight brings me to my question as to whether there is anything out there?

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Published: June 09

My symptoms are the usual, dry eyes and mouth. I have a real problem with my eyes; they seem so blurry and now they are so sensitive to the sun and haze. I use all kinds of drops and still have a lot of problems with them. I use Biotene for the dry mouth, and this brings some relief, along with the drinking of a lot of water.

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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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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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