Viewer Comments: Sjogren Syndrome - Describe Your Experience

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Sjogren Syndrome - Describe Your Experience

Please describe your experience with sjogren syndrome.

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Comment from: nicsgram, 65-74 Female (Patient) Published: November 29

My eyes are very dry but frequent use of over-the-counter drops are helpful after trying numerous brands. I ache and I have Raynaud's but the worse symptom for me is the sore throat and tongue. Salt rinses and lozenges only work for a few minutes. I'm losing my sense of taste and the enjoyment of eating. Because there doesn't appear to be any infection, the doctor doesn't treat it. I'm very frustrated.

Comment from: Lily, 65-74 Female (Patient) Published: June 08

Diagnosed with SLE Sjogren's overlap 15 years ago confirmed by lip biopsy. Best treatment for me is rituximab. I use Biotene products and they are quite effective in keeping the dental problems at bay. My symptoms are very dry scratchy tears. My mouth and throat get so dry that I choke on food. I take water with me everywhere.

Comment from: Cathy, 45-54 Female (Patient) Published: February 15

I have Sjogren's. I am 51. I have had it for eight years. My hands hurt about 80% of the time, and my ankles, knees, and hips hurt all the time. I do a lot of work with chainsaws. While I'm doing it, my hands don't hurt. I've never had glasses until I turned 45. I can't climb stairs. I am a farmer—a life-long female farmer. I've never needed help from anyone. Now I feel like I'm lucky to get to the doctor to get supplies.

Comment from: Spoony, 45-54 Female (Patient) Published: November 21

I was diagnosed with Fibro in 1998 and Sjogrens in 2003. Previously misdiagnosed with Lupus (SLE) and took numerous meds for it. I found an excellent doc, but there are always unanswered questions or you can't fully comprehend what you're being told about test results. After 8 years of Plaquenil (only took 1 pill, not the 2 recommended) after noticing changes in my vision and was diagnosed with macular problems, was ordered off the Plaquenil and placed on Imuron (Azathioprine - 50 mg). Noticed immediate negative reaction (stiff shoulders, pains in neck, knee pain, just overall felt crappy) in addition to Prednisone (which makes me feel totally disconnect from myself - described as Depersonalization). Dr. told me to have bloodwork once a month and call pharmacy for questions with interactions. Pharmacist said weekly bloodwork required for the first month, then biweekly for months 2-3. Doc didn't concur(too much of a hassle to do it more often). Going to see him again for alternatives imunosuppressives w/o such drastic side-effects, at recommendation of sister who is a nurse. IBS a problem, bloating is so bad I get full from a couple sips of water. You just learn to deal with it - make it to work everyday, a little tired though and always feel that I'm not going to wake up the next morning because the pain and fatigue are constant. Hard to explain to someone how you feel and can be depressing.

Comment from: mgreenwood, 45-54 Female (Patient) Published: October 18

I was diagnosed over 15 years ago. I have dry eyes. Drops don't help much anymore. My mouth stays dry and I'm never without water or liquid. My lower back is in constant pain since I fell and have muscle spasms. My neck has degenerative disk and hurts. I have worked all my life and it is so difficult on me to do my job and take care of my family. I am in pain and have difficulty getting up and down steps. My neck and eyes are a major factor in my pain. Sometimes I can't see to read or drive.

Comment from: Janet, 55-64 Female (Patient) Published: October 06

I started taking Restasis in July. But, if I drive more than 3 miles, I have severe eye pain. The pain is only relieved by sleeping. If I do something away from home for a day, it takes 2 days for the redness and pain to go away. I have to sleep 12hours during that time and then have an hour nap. The same thing happens if I have company over and do not sleep.

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Patient Comments & Reviews

The eMedicineHealth doctors ask about Sjogren Syndrome:

Sjogren's Syndrome - Diet

What changes to your diet have helped manage your Sjogren's syndrome?

Sjogren Syndrome - Symptoms

What were the symptoms of your Sjögren's syndrome?

Sjogren Syndrome - Treatment

What was the treatment for your Sjögren's syndrome?

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