Patient Comments: Sjogren's Syndrome - Treatment and Diet

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?

Comment from: Pam, 55-64 Female (Patient) Published: December 14

I am 59 and was diagnosed with Sjogren's syndrome 2 years ago, but have had it much longer it seems, probably 3 to 5 years thinking back to the symptoms. I also have lupus SLE (systemiclupus erythematosus), diagnosed 15 years ago now. I took Plaquenil and prednisone for the lupus at first, now I take nothing for the lupus but take Salagen for the Sjogren's and it helps greatly. I am supposed to take the Salagen 3 times daily but it creates moisture for the glands and three times daily makes my nose run too much so I only take it once. I am thinking, to make it twice daily would be good. I am also taking evening primrose oil, coconut oil and flax oil. Fish oil makes the GERD worse, but will try krill and only take on full stomach to see if I can tolerate. Also I stopped all night shade vegetables, white and yellow potatoes, eggplant; sweet potatoes are ok. It seems to help with the inflammation. I try to cut out sugar as I have issues with candida or yeast. I use stevia and try to avoid aspartame at all costs. Sometimes I use the sucralose if stevia not available.

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Comment from: danaprov, 55-64 Female (Patient) Published: September 21

I'm a lucky one. I got diagnosed 7 years ago with Sjogren's syndrome after a weird rash, which turned out to be autoimmune related. I had thought my eyes were just tired all the time; I'd kept water by my bed at night forever. I've struggled with digestive issues; I have arthritis and bone spurs in my hands and feet, respectively. I say I'm lucky because I found a lot of helpful information when I googled autoimmune and diet. Avoiding wheat has made a huge difference; taking fish oil and investigating other aspects of my health and eating an anti-inflammatory diet and taking certain supplements has made a huge difference. I want to encourage others to consider making changes in lifestyle and diet- there's a lot of information and support available.

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Comment from: DW, Female (Patient) Published: February 20

I was diagnosed with Sjogren's syndrome about 6 years ago in 2009. It started with scratched cornea, dry mouth, body aches and pain in my joints. I went to my doctor and she did blood test which came back positive ANA for rheumatoid arthritis. I was put on prednisone and that caused cataract. I had no sleep and we found out I had sleep apnea so I am on CPAP and oxygen. I am on Plaquenil 200 mg 2 times a day, fish oil, and cyclobenzaprine 10 mg. I am also taking vitamin D, and Biotin for hair, skin, and nails. I have changed my diet. I have found a shake called 310 Shake, or Isagenix shakes, and Isaflush, a cleanser for life. I eat lots of vegetables. I found that any sugar causes pain and swelling, please try no sugar, if you must use, try Stevia. Use coconut oil and coconut water. Stick to meat, fish, and eggs. No bread, pasta, crackers, or chips. Good luck to all.

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Comment from: shiggie, (Patient) Published: October 02

I have had Sjogren's syndrome for 15 years including vasculitis, joint pain and dry eyes. I have been able to manage it with Plaquenil, until six months ago when I developed peripheral neuropathy in both legs and feet. My rheumatologist put me on Imuran and I had three months of continuous bladder infections, seemingly unresponsive to seven different antibiotics. I stopped taking the Imuran due to the lack of immunity for infections. Since stopping the Imuran, I developed an infection in my tooth and sinus cavity and have sore cervical lymph glands. I find if I take 1000 mg of vitamin C every day, the cervical glands are less sore. I had to have my tooth pulled and am now waiting for an implant. I take gabapentin for the neuropathy but it doesn't seem to help that much. I carry an ice bag in my purse and take one to bed with me at night, which helps more. I find myself being very irritable, although I take a small dose of Prozac, which is great coping medicine. If I can keep very busy, I don't notice all my symptoms so much and emotionally do better.

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Comment from: 45-54 (Patient) Published: October 01

I have been diagnosed with Sjogren's syndrome for over 20 years now. The first two were terrible, I had dry mouth and could hardly eat, joint pain, and terrible fatigue. But 20 years on, I do not take medication for it. I walk every day for 20 to 30 minutes a day. I only eat what the sun grows, except two fish meals and one meat meal per week. I do strength training as well. I push through the pain every day. I refuse to take medication. I think it does damage to my body, although I do have a flu shot and a pneumonia shot as I developed pneumonia recently and was on life support for 11 days, but came through it.

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