I'm a SS for many years and would love to hear from other sufferers.
Hi Irene, I’m still waiting for Diagnosis from blood tests a fortnight ago. Drs and consultants all think I have it, but won’t give me any medication until they know for sure. I have known for 2-3 years there was something wrong but as I have under active thyroid too I’ve always put it down to that. Until Jan of this year, when everything flared up. Swollen and painful knees, Dry mouth, dry ears, dry eyes, but the chronic tiredness is the worst, debilitating. They are going to put me on Hydroxyquinine, anti malaria drug to dampen the immune system, but only WHEN they get blood test results.
Hello Christine. I too have an underactive thyroid and medication has helped in that department. For my dry eyes drops have really helped too but my biggest problem is swallowing food which has to be mainly blended. My blood test results confirm rheumatoid arthritis but I have absolutely no joint pain at all. Have had loads of dental treatment over the past 20 yrs and still at it. Thanks for getting in touch and good luck to you....
Hi........I was diagnosed with Sjögren’s about 7 years ago but I’m sure I’ve had it for 20 years or more. My biggest problem, like many others is an extremely dry mouth. So afraid of problems with my teeth. Go to the dentist twice a year and now using a water pick which really keeps my mouth much cleaner.
Also in the past 5 years I developed neuropathy in my feet and lower legs which was progressing rapidly so found a great neurologist in Phoenix and I’m on an immunosuppressant and it hasn’t progressed in about 4 years but of course hasn’t gone away. My balance is bad so do exercises everyday to keep a strong core.
At times fatigue is an issue but helps if I get to bed early and get a good nights sleep which isn’t always the case. I also have arthritis mainly in my hands.
Otherwise i I have a fairly normal life and doing okay for a 72 year old.........😎
Hi Beverly, yes I’m 76 & sure ive had this for a long long time. The Chronic fatigue is the worst for me. Can I ask what medication you’re o. Xx
Hi I’m on Restatis for dry eyes. Azathioprine 100 mg dly to suppress my immune system from further damage to peripheral nerves.
Amitriptyline 50 mg at night to help sleep and nerve pain.
I’ve been on all of these for 5 years and I don’t think I’ve gotten worse during this time except for fatigue at times.