Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Comment from: Kathy, 55-64 Male (Patient) Published: November 14

I was diagnosed with Sjogren's disease over ten years ago. It started with unbearable pain in the right top muscle in my back. The pain was so bad, I could barely breathe. The pain lasted 2 days. To this day, I feel as though the muscle is going to spasm at any time. I have to be careful not to stay in one position for any length of time, as the muscles in my body will be painful. I can't take pain medications because of other medicines I take. I use Restasis for my eyes, having to use eye drops quite often during the day, and at night I have to use ointment when I go to sleep. (Restasis is wonderful.) I chew gum to keep my mouth from drying out, and I use lip balm for my dry lips. Lately I feel more pain, and I don't know why. I was going to a doctor, but he moved, so now I have to find someone new. I hope that someday soon a cure is found for it.

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Comment from: wisegirls3, 55-64 Female (Patient) Published: October 24

I was diagnosed with Sjogren's syndrome when I was 19. I am now 55. I have a great rheumatologist who sees me every eight weeks. I take hydroxychloroquine twice a day, use eye drops a lot, and drink water constantly. I had to have my left parotid gland removed when I was 20. I was diagnosed with a tumor in my sinus cavity in my 42nd year. My doctor had a biopsy done and I was diagnosed with a rare form of cancer called amyloidosis. They took a bone marrow sample and did a total skeletal scan and did not find it anywhere else in my body. The tumor is still there because it envelops the bone beneath my eye. They cleaned out everything in my left sinus cavity to allow for better airflow. Now I am struggling with my legs and feet swelling, keeping my vitamins B12 and D up and my liver counts down. At times I am exhausted but for the most part I live a fairly normal life.

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Comment from: Sarah, 65-74 Female (Patient) Published: October 22

I was diagnosed with SLE (systemic lupus erythematosus) about two and a half years ago. Recent lab tests also showed Sjogren's syndrome. I've had eye issues for two years, with the vitreous gel bursting and multiple floaters in both eyes. My vision started to diminish and my left eye vision was blurry. I saw one retina specialist and he told me I may eventually need surgery as a "membrane" was growing over the retina. I went for a second opinion, and this eye doctor prescribed Restasis (they have a generic in Canada), and preservative free OTC eye drops. She said "see you in 4 months. Having many autoimmune diseases is a tough way to live; especially if you're 70 years old. Every day is a struggle!

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Comment from: Jen, 65-74 Female (Patient) Published: October 18

I was diagnosed with Sjogren's syndrome in 2009 after severe dry eyes. I take Restasis 4 times a day as well as many other over-the-counter drops. I have a dry throat and trouble swallowing. I am very constipated and use milk of magnesia daily. I only go to an internist. I refuse to take prednisone. My rheumatoid factor is 192 and climbing yearly. So far I only have trigger finger. I have lost weight since I was diagnosed. I exercise daily. I refuse to give in to this. I worry about my sight since my eyes are inflamed weekly.

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Comment from: Tamara, 45-54 Female (Patient) Published: May 28

I have been diagnosed with UCTD (undifferentiated connective tissue disease)/lupus/Sjogren's syndrome. Just recently I was told it is Sjogren's. I have so many things going on but I will say I use products for dry mouth, spray and Xylitol for nasal, Restasis and other medicines. It is very overwhelming. I hope that we all get more knowledge and relief for what we are going through.

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Comment from: breakaleg06, 45-54 Female (Patient) Published: January 26

I was diagnosed with Sjogren's syndrome 2 years ago. I have been suffering from dry mouth horribly since I've gotten a cold a couple of weeks ago. I tried taking Benadryl to help clear up my nasal passage. I couldn't stand the way my mouth was overly dry.

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Comment from: MG, 35-44 Female (Patient) Published: October 02

I was just diagnosed with Sjogren's syndrome and lupus. I am concerned because I live overseas and I'm not sure If I am getting enough information or if I am feeling the way I'm supposed to. I feel that I have no one to ask. I feel extremely lethargic most of the time. I started taking cortisone, a small dose, and I feel better. I have a constant swollen sensation in the glands in front of my ears. This is very bothersome.

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