Patient Comments: Sjögren's Syndrome - Describe Your Experience

Please describe your experience with Sjögren's syndrome.

Comment from: maddi6, 75 or over Female (Patient) Published: April 19

I was diagnosed with Sjogren's syndrome in 2004. I had been ill for 2 years prior to this. I was then diagnosed with mixed essential cryoglobulinemia and I had to have 38 apheresis treatments where they remove all of your blood then centrifuge it and replace the plasma with albumin. So far this hasn't returned but I now have very severe pain across my shoulder blades and into my ribs. I also managed to get a herpes infection on my cornea and will be on anti-viral medication for the rest of my life. I just want to feel well again.

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Comment from: CURTISES1, 75 or over Male (Patient) Published: December 29

I have had Sjogren's syndrome for about 13 years, starting with dry eyes and progressing to macular holes in both eyes which have been corrected. My latest problem is skin lesions, like something is depositing out of my feet and legs. It is scaly, and can be removed with a bit of scrubbing but leaves my skin irritated. It is progressing up my body in the form of a severe skin rash. The rheumatologist that I am seeing has prescribed acetonide cream. It works marginally.

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Comment from: Karin, 35-44 Female (Patient) Published: September 28

I was just diagnosed with primary Sjogren's syndrome in April/May after stumbling on an article and realizing I had multiple symptoms that I could definitively trace back at least 3 years. These include dry mouth (with numerous dental issues), dry eyes, GERD, petechia on lower legs, fatigue and muscle/joint pain and periods of neuropathy. However, I have a history of carpal/cubital tunnel syndromes so it's difficult to say if the arm pain and neuropathy are related to Sjogren's or carpal/cubital issues.

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

I have had Sjogren's syndrome since I was a child but did not get diagnosed until I was 30 years old. I had a lip biopsy and other testing done and was diagnosed. I have had to have first all my teeth capped and when they all fell apart I had to turn around and have all implants. The cost was phenomenal. For my dry eyes I take bilberry leaf daily. This has helped immensely. Also I suck on xylitol candies which actually reduce cavities in people with their teeth. This has been a total life saver. I am now able to go into a store without a water bottle by having the xylitol pills handy. National Nutrition sells them by jars of 240 for around USD 11. They are worth it. At present I have had a terrible episode of ultra-severe pain in my hip and thighs. I could not even walk more than a few steps without being in agony. I have had to go on high dose of prednisone and Plaquenil as well as naproxen. Up until now I have been able to manage but it suddenly one day just became debilitating. I do take many supplements such as krill oil and a host of other things that help joint function and so forth. The prednisone is keeping me from sleeping at night but in order to walk I have to take it. It took about 12 days for it to work. Percocet did not help for the pain it was just that bad. Please make sure to take bilberry for the eyes, krill for the joints and magnesium malate as well which is so important. Also I take 4000 IUs of vitamin D and vitamin K2 to help utilize it. I eat a very healthy diet and have very little if any sugar in it. I hope some of these ideas help someone.

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Comment from: Cynthia, 55-64 Female (Patient) Published: June 30

I am 62 years old. For years I had bouts with fatigue. My hair began to fall out and I mentioned this to my primary doctor. She requested blood work and Sjogren's syndrome showed up. A visit to the rheumatologist confirmed Sjogren's and rheumatoid arthritis. The rheumatologist referred me to an ophthalmologist and plugs were immediately placed in my eyes to help the dryness. I have tingling in my hands and feet. Oh, I have had injections in my head to stimulate hair growth. I have spent over USD 1500 for cavities and am no way finished yet. My lips used to be so dry and crusty; I thought it was stressed related. I still have a nagging cough. I wake up with tingling in my hands and feet but after walking 5 miles it helps. I survived breast cancer, I consider this another journey to go through.

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