Sjogren Syndrome

Question:

Please describe your experience with sjogren syndrome. Submit Your Comment

Comment from: debra, 55-64 Female (Patient) Published: May 25

I was diagnosed five years ago with Sjogren's syndrome and have lost most of my sight. I have primary Sjogren's, which went undiagnosed for years till my eyes and corneas melted. I take 8 mg of methotrexate once a week and use Tears eye drops. But I also take omega three oil, juice, lots of greens, and walk 112 stairs a day. I am telling you diet and exercise help. Seriously, do not let them tell you different. I have one of the best rheumatologist, he is wonderful and is looking after me. I get blood check every month and I just notice this year that I am achy but I think it is overdoing the stairs. Diet and exercise help. I wonder how many of you had thyroid disease before being diagnosed, I think there is a link.

Comment from: san, 45-54 Female (Patient) Published: October 07

I was diagnosed about 8 years ago. The Evoxac I take is a life saver, it allows me to at least function, but heaven help me if I miss a dose. I also take large doses of iron for the fatigue. Funny how one missed dose and it takes 3 days to catch up on my energy. I just dealt with the symptoms for these years not realizing some of the symptoms I thought were just age(I'm just 54) are actually Sjogrens symptoms. I hate whiners so most of the time I keep things to myself. It's reassuring reading others comments knowing I'm not the only one suffering. My joints in my hands hurt all the time. I spend most of my days on the computer at work so you just endure. My hip joints have really been bad this summer, thought it might be bursitis, but I'm sure it's the Sjogrens. I could be much worse. I am able to get out of bed every morning and thank God for it. I just take one day at a time, and am determined this WILL NOT get the best of me.

Comment from: Ann, 35-44 Female (Patient) Published: September 20

I hate it. I was diagnosed over three years ago. I hurt a lot. My knees mostly. My eyes burn most of the time. I choke on food a lot. I take so many meds I feel like a pharmacy. I take shots also. I take B12 which really does help a lot with memory. I take methotrexate shots in the muscle of my legs once a week. I take hydrocordoquine twice a day. I hate multi vitamins. I take pills for my eyes, folic acid, and numerous other meds. I get sick all the time because my immune system cannot fight off anything. I have lots of stomach problems with bowel blockages, acid reflux, and pain. I take lidoderm patches for pain and sometimes I give myself allergy pills to knock myself out for pain. I feel useless and I hate not being able to take care of myself sometimes. I see no end in sight and what I wanted to do and be is a memory. I am 41 years old and ready to throw in the towel.

Comment from: 55-64 Female (Patient) Published: August 27

I can't believe I have it. I'm so fatigued I have trouble concentrating. I get very dizzy. I am so over heated at 70F that the sweat runs from me. I never used to sweat. I have trouble sleeping because I ache all over and because I'm so hot. The bed feels like it is on fire where I have been laying. My jaw hurts on the left side. It is hard to bring my back teeth together. One leg aches continually. I ache from head to toe. My mouth isn't really dry and my eyes aren't dry. It seems my throat is however. I get so desperate for a drink of water sometimes, I'm almost frantic. I get a prickly feeling in my chest and have to guzzle water or some juice. Please tell me if the doctor is on the right track.

Published: August 27

I was diagnosed three years ago with Sjogren's syndrome by a rheumatologist. I have never been a person who took medication until now. My doctor put me on Plaquenil to maintain inflammation, Evoxac three times a day for dry mouth, and Restasis eye drops twice a day. The Restasis takes at least 6 weeks until you still start feeling the relief from dry eyes. I also had tear duct plugs put in. I must say, my eyes are no longer red with pain, and my mouth has some relief. For once, I feel like a new person.

Comment from: Apumpkinseed, 45-54 Female (Patient) Published: May 29

I was just diagnosed with Sjogrens. I have been sick for three years with no insurance to see a doctor. I wake up out of a sound sleep about four to five times to drink water. My joints ache all over and my eyes are so dry I can feel my eyelids scraping across my eyes. I do have other symptoms which cause me to believe I also have lupus. I did read that most people with Sjogrens usually have another autoimmune disease. Also, I am losing a lot of weight.

Comment from: Nikita, 45-54 Female (Patient) Published: June 10

Have Sjogren's with symptoms of dry mouth, dry eyes (use artificial tears) TMJ, and constant sinus pressure/pain and sinus infections almost every three months for last 15 years (had sinus surgery last year, and use Zetonna nasal aerosol and saline spray). Occasionally have acid reflux, fatigue, thick mucus in throat and deep barking cough. Sometimes get "brain fog" especially when stressed and don't sleep well due to sinus pain. Geez, now that I've written out my symptoms, no wonder I feel sick of being sick! Sure hope a cure for Sjogren's will be found!!

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 eyes...no 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.

Patient Comments & Reviews

  • Sjogren's Syndrome - Diet

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

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  • Sjogren Syndrome - Symptoms

    What were the symptoms of your Sjögren's syndrome?

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  • Sjogren Syndrome - Treatment

    What was the treatment for your Sjögren's syndrome?

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Medically reviewed by Kirkwood Johnston, MD; American Board of Internal Medicine with subspecialty in Rheumatology

REFERENCE:

"Diagnosis and classification of Sjögren's syndrome"

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