Patient Comments: Sjögren's Syndrome - Treatment and Diet

Question:

What treatment has been effective for your Sjögren's syndrome? Have you made any dietary changes, and have they been effective in managing your Sjögren's syndrome? Submit Your Comment

Comment from: Hippieck55, 45-54 Female (Patient) Published: August 20

I’m 53 years old and found out about my Sjogren’s syndrome when I found out I had rheumatoid arthritis and lupus. I cut out all sugar from my diet and drink only water. None of the over-the-counter dry mouth items help me. I’ve had it for way longer than I have known. It has wreaked havoc on my teeth. Being on disability with no dental insurance I’ve had to get a denture on top and a partial on bottom, my teeth were just falling out! No cavities. I wouldn’t wish this on anyone!

Comment from: Melol, 45-54 Female (Patient) Published: July 18

AIP diet helps with managing Sjogren’s syndrome, just hard to do when so exhausted.

Comment from: Patient, 25-34 Female (Patient) Published: March 28

I got diagnosed with Sjogren’s syndrome in August 2016, just after turning 30. I have been on NSAIDs, Plaquenil, tramadol and amitriptyline. I have severe pain in my hands and feet making daily life impossible without all those medications. I have reduced sugar by 90 percent but don't seem to find much difference in quality of life.

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 (systemic lupus 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.

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.

Comment from: sandy, 45-54 Female (Patient) Published: December 06

I was diagnosed with pre Sjogren’s syndrome and the rheumatologist has prescribed Plaquenil. I wonder if this drug will help reduce future damage or if it is just dealing with present symptoms. Many of your comments seem to be stating that the drug hasn't helped that much.

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.

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.

Comment from: Nan, 65-74 Female (Patient) Published: February 24

I take 3000 IU of flaxseed capsules daily. It has helped me with the extreme dry eyes caused by Sjogren’s syndrome. My tear ducts were plugged as well.

Comment from: slappie, 65-74 Female (Patient) Published: August 11

I am 68 years old and have had Sjogren's syndrome with vasculitis for the past 15 years. The symptoms have been kept at bay with Plaquenil and eye drops, other than the purpura (purple spots that would randomly appear and disappear all over my body). Six months ago, I developed peripheral neuropathy in both lower legs and feet, severe heartburn not relieved by Protonix, overwhelming fatigue and a feeling of being 'punched in the gut' all the time. When I finally got in to the rheumatologist, on referral from my internist, he added Imuran (azathioprine) to the regimen. I felt better right away but 2 months into it I developed a urinary tract infection (UTI). I have been on 4 different antibiotics, keep growing new bugs when they do another urine culture, and am still symptomatic with the constant burning pain in my urethra. The rheumatologist has now stopped the Imuran (immunosuppressant) until the infections clear up. I can't decide whether to re-start again and risk more infections, if the suppression of my immune system is what is allowing the bladder infections to occur.

Comment from: AKgirl, 45-54 Female (Patient) Published: January 17

I am 49 years old. I was diagnosed with Sjogren's syndrome four years ago after my dental hygienist asked me if I experienced dry mouth (I have lots of dental work in my mouth including implants). She suggested that I go to my doctor for tests. My general doctor referred me to a rheumatologist. My eyes felt "tired" and would bother me in the evening. Tests confirmed Sjogren's and dry eyes progressively got worse. I take the usual: Plaquenil and Restasis. I have tear duct plugs and use eye drops every 20 minutes. For dry mouth I use gum and candy with xylitol, water and Exovac twice a day. I take 1200mg Omega 3 fish oil pills for my eyes and skin. I avoid breads, crackers, chips and popcorn is the worst. I stay active and workout three times a week and I have no joint pain.

Comment from: Andy, 65-74 Female (Patient) Published: July 30

Like all chronic conditions, Sjogren’s is difficult to deal with because it ebbs and flows. I'm in the midst of a flare and had no idea what was wrong until a friend with the same condition mentioned how she was feeling. I'm now on naproxen for joint pain. My dentist kindly sees me twice yearly for a check/clean, as my mouth gets very sore. I often lose my voice and have difficulty swallowing. The fatigue can be annihilating; I literally fall over suddenly. In my case ignoring the fatigue would be a mistake; it's invariably a signpost telling me I'm doing too much. Normally a short snooze skims off the worst and makes it possible to carry on. I'd say, don't ignore what your body is telling you. If it tells you to rest, then rest. There is no shame attached, and life will still be there when you get up again.

Comment from: Shaymoore70, 35-44 Female (Patient) Published: July 11

I'm 43 years old. I was diagnosed with Sjogren’s syndrome last year. I suffer with dry eye, dry mouth, throat, nose and I itch quite a bit. It's really difficult having this disease because my rheumatologist prescribed Plaquenil, but I don't see any progress. I hurt all over all the time and also have tingling in my arms legs and feet which also swell. I'm trying to find a new doctor who will take my illness seriously. I'm tired of being in chronic pain and not sleeping at night. This has really made my life difficult especially since I have a small child.

Comment from: Dawn, 45-54 Female (Patient) Published: May 02

I am so happy I found this site. I was just diagnosed with Sjogren’s syndrome, but my main diagnosis is lupus. I got Sjogren’s from lupus. I am 45 years old, and the doctors tell me I have lived with this from birth. I only started noticing weird symptoms a year ago, but nothing that would make me know it is Sjogren’s or lupus. I went to a dermatologist, who said I had shingles and prescribed prednisone and an antiviral. The next day I felt great. I had noticed my eyes were so dry they hurt. One was so swollen I was told it was allergies. My mouth was so dry I would choke. I started thinking I was dehydrated. My doctor did too, and sent me to hospital to be rehydrated intravenously. This did not work. Then about three months ago, I noticed my ears were making noises and “killing” me, my glands were swollen, my throat felt like there was a grapefruit and razor blades inside, and I was so tired that I slept for three days/nights in a row. When I finally got up, my kids screamed. My face was distorted, crooked, and that grapefruit I felt in my throat, was even bigger and looked like it was growing on the outside of my neck. I went to ER and they said the shingles had given me Bell’s palsy, had affected my adrenal gland, and I also had pneumonia. So basically, I was misdiagnosed, although the prednisone made me feel better. I am wondering if anyone is on medication for all the horrible symptoms. I’m on Plaquenil. Also, I would love to hear how others deal with this disease; anything that helps.

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Comment from: Monica, 45-54 Female (Patient) Published: April 11

I have been managing the symptoms of Sjogren's syndrome since the age of 20; I am now 45 years “young.” I deal with the severe dry eyes, mouth and vaginal issues. I’ve had both tear ducts closed, use Celluvisc for my eyes and drink plenty of water and chew sugarless gum. I floss two times daily and use Biotene at times. I refuse to allow this disease to take over my life. I press through the symptoms and exercise about three times weekly. I even sing in the choir and ignore the coughing and dryness I feel in my throat. I don't focus on the symptoms – I focus on healing and staying healthy. Yes, I do experience fatigue, but I inform my body that I won’t experience these symptoms. I take vitamins and continue to move forward. This illness will not hinder my life or affect my happiness. I won’t allow it.