Patient Comments: Sjogren's Syndrome - Describe Your Experience

Please describe your experience with sjogren's syndrome.

Comment from: susan, 55-64 Female (Patient) Published: May 21

I am 55 years old I had Sjogren's syndrome for 2 years now. I feel that it is getting worse. I started with the dry mouth and dry eyes but now my elbows, hips, knees, and fingers hurt. My medications do not work all the time. At night I get up several times so I can drink some water because my mouth so dry. I am also getting very depressed.

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Comment from: Mspink, 45-54 Female (Patient) Published: April 22

I was diagnosed with Sjogren's disease and it is secondary to my rheumatoid arthritis. My symptoms are dry eyes, dry mouth, and dry nose. I am on methotrexate, Plaquenil and gabapentin and it seems to be working quite well.

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Comment from: smithjoy, 55-64 Female (Patient) Published: March 14

I also have systemic lupus in addition to Sjogren's syndrome. I wonder if Sjogren's can cause dry feet as well as constant itching of the bottom of the feet as well as around the toe nails. The top layer of skin on my feet has also peeled.

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Comment from: Gaynor, 75 or over Female (Patient) Published: February 26

I have dry eyes and mouth due to Sjogren's syndrome. I use Systane eye drops at night only and Biotene at night as well. If I am talking a lot on the phone I get a dry throat, but I am ok otherwise.

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Comment from: angelaamy, 65-74 Female (Patient) Published: January 03

I had swollen glands and diagnosed as a mild case of mumps as a child, as a teenager and as an adult. I was finally correctly diagnosed with Sjogren's syndrome, I don't know if I ever had mumps as a kid or was exposed. I also have fibromyalgia, arthritis and low thyroid. Nothing is fatal but if it's a 'learn to live with it' disease I probably have it (sarcasm, my stress reliever). I use OTC moisturizing eye drops and drink water all the time. I am on pain medications. I just wish could find a way to reduce the 'chipmunk cheeks', hate having fat face!

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Comment from: love2sing55, 35-44 Female (Patient) Published: October 18

I just got diagnosed with Sjogren's a couple of weeks ago. I was having extreme fatigue, muscle tightness, spasms and shooting nerve pain. I also have notice eyes and mouth more dry. Also TMJ and arthritis issues. I'm on new medications, gabapentin and hydroxychloroquine (generic for plaquenil). This seems to be helping.

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Comment from: sblogg, 45-54 Female (Patient) Published: April 17

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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Comment from: Marleyteach, 55-64 Female (Patient) Published: March 26

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

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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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