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: 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.

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: 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.

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!!


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Patient Comments & Reviews

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Sjogren Syndrome - Treatment

What was the treatment for your Sjögren's syndrome?

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