Sjogren's Syndrome - Describe Your Experience
Please describe your experience with sjogren's syndrome.
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What is Sjögren's syndrome?
Sjögren's syndrome is an autoimmune disease characterized by dryness of the mouth and eyes. Autoimmune diseases feature the abnormal production of extra antibodies in the blood that are directed against various tissues of the body. The misdirected immune system in autoimmunity tends to lead to inflammation of tissues. This particular autoimmune illness features inflammation in glands of the body that are responsible for producing tears and saliva. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and decreased saliva production and dry eyes. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and dry lips.
Sjogren's syndrome with gland inflammation (resulting in dry eyes and mouth, etc.) that is not associated with another connective tissue disease is referred to as primary Sjögren's syndrome. Sjögren's syndrome that is also associated with a connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma, is referred to as secondary Sjögren's syndrome. Dryness of eyes and mouth, in patients with or without Sjögren's syndrome, is sometimes referred to as sicca syndrome.
See what others are saying
I have had type 1 diabetes for 37 years and was diagnosed with Sjogren's syndrome a year ago. I say diagnosed, because at times, over the last 15 years, I've had some of the symptoms. My ophthalmologist ran blood tests after my symptoms weren't getting better and my corneas were flaking. She gave me clear contacts which do help with the pain from eyelid abrasion. I found a great rheumatologist who listens to me, cares about how I am feeling, and discusses the disease with me. It's important to have really great medical help. I am now taking pilocarpine, Plaquenil, Restasis, and methotrexate. These are helping, but not as perfectly as I'd like. I have good days and bad days, and flare-ups and times of remission. Things that help me are proper sleep, good diet, and trying to avoid stress. I have an extremely stressful job, but I try to have a good attitude, slow down, and smile a lot, which controls my stress. Maybe I've learned from having diabetes that how I feel physically is controlled by my mental well-being. If I remember this disease is not going to control my life, it won't. It may be a speed bump in the path my life takes, but it's not going to control the quality of my life as I travel through it. My life is a gift, and what I make of it is a choice
I probably had symptoms of Sjogren's for about seven years, but only realized what I had a year ago when I also started to get rheumatoid arthritis. I went through an emotional whirlwind last year, mostly due to pain and disability with the RA. It has definitely affected my personality. I can get very down and have to fight that all the time. It is important to accept it and to take it easy. My life has been very stressful with a demanding job and living in a developing country. I am learning to make my life less stressful but have a long way to go. The most difficult part of the disease is that it has impacted my relationship. Sex is painful, but my husband has been very supportive. I take 15 mg methotrexate every six days, and it helps, but I can still have bad days. Now, though, most are good. I swim every day, my physiotherapist has fixed my shoulder, and I have a great diet free of sugar and alcohol. I try to stay positive. I am getting on top of it.
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