Sjogren’s Syndrome – Introduce yourself and meet others

As another Sjogren's sufferer who recently confirmed that my SFN is caused by Sjogren's I am glad to see more talk about this disease. I suspect that it is much more prevalent than is realised, especialy within the autoimmune community. Take a hard look at your symptoms and talk to your rheumatologist. You probably have one.

I tried plaquinil and it made everything taste like cardboard. I quickly lost 50 pounds without trying and became very dehydrated. Aside from being too weak to stand, and loving the weight loss, the medication did nothing for me.

I totally understand. That medication was one of the first meds that I was put on and I could not tolerate it. I’ve tried many with no results and I have been on several that helped for a period of time then stopped but worked well for a period of time. The very good news is there are many medications now so get a great rheumatologist and hopefully one that listens and don’t worry about this medication don’t look back. Be your own advocate don’t doubt yourself. No one knows you..but you. Please know this group cares. Because we do.

@colleenyoung I really am suffering with thick mucous in my mouth, especially at night. I take Cevimeline 3 times per day. It is still awful. I have read that Plaquenil doesn't really help with dry mouth and thick stuff in my mouth. Does anyone have anything good?

@sheritaylor Welcome to Mayo Clinic Connect! The members will see your question in the morning, but, in the meantime I just wanted to welcome you and tell you that you’ve really come to the right place!
Is Sjögren’s syndrome a new diagnosis for you? I’m sure everyone here can help you with it. I, too, have very thick mucous in my mouth, especially at night. I find that OTC allergy pills really help. You might ask your doctor about them and see what they recommend.

I was diagnosed with Sjogren's Disease about 4 years ago. I have severe dry eye, and have lost vision in my left eye. They tried eye lid surgery but that didn't work. That eye is so fragile the doctors are afraid to try another surgery. What caused the blindness is a huge cataract that was brought on by the meds used in that eye to help with the pain. I now have tolerable discomfort in that eye. My other eye, thankfully, is holding its own, enough that I am able to drive. They say I also have sarcoidosis in my left eye.

I also have the excess phlegm in my mouth, and am eager to hear solutions. The allergy angle is interesting

@sheritaylor - I don't have Sjogren's but do have dry mouth at night and sometimes the thick mucous, mostly due to using a CPAP. I've found Biotene mouthwash at night helps me some.

It is easy to see why the researchers initially thought it a gland disease. That seems to be what bothers people the most. The rheummy who diagnosed me made sure I got several specialists: a liver, kidney and pain. You have to look at the whole body.

I have had Hashimoto's Thyroiditis for several years, with multiple thyroid nodules. I also suffer from many of the symptoms I see associated with Sjoren's. Can this disease be positively diagnosed, & if so, what is the protocol?