Sjogren’s Syndrome – Introduce yourself and meet others

@sheritaylor I forgot to mention that another one that helped me prevent the thick mucous and dry mouth was popping in a XyliDENT Xylitol Tablet and letting it dissolve in my mouth before bedtime. They are inexpensive and coming in different flavors.

@sheritaylor Just store brand

@sheritaylor Good morning. I too have the thick choking stuff. But only at night laying down. So I wonder if it is coming from/draining from my nose? Anyway, I give each nostril a squirt of Otrivin with moisturizers mist spray. no more issues with the stuff.

@jwpmc rheumatologist
If that doesn’t work
ENT- they biopsy the glands in your mouth
Eye doctor- does two different test on your eyes to check for Sjogren’s.
I tested positive on the last two and later six months later my labs came back positive for Sjogren’s mixed connective tissue disease, lupus and hashimotos.
I was dna tested for lupus since I had so many positive test at once. That came back positive.

@becsbuddy I’ve been diagnosed with Sjogren’s disease about 3 years ago. I also have other autoimmune diseases. Any recommendations of a good Rheumatologist in the Central Florida area?

@colleenyoung I have joint pain in my knees and back. Stiffness when I wake up in the morning. I take low dose Naltrexone. I couldn’t take Plaqunil or Methotrexate. I’m anxiously awaiting the new medication for Sjogrens in Phase IV of a trial.

@artemis1886 thanks for the input; will follow up with the opthomologist as currently consulting for a few eye problems.

I was diagnosed with Sjogren's 12 years ago. It is not as bad as cancer at least.... I use eye drops, special mouthwashes, creams for skin, inhaler and nebulizer....it is liveable.

I was diagnosed in 2007 (33) with Sjogrens, no treatment until age 40 when the disease decided to flare, then was only given Plaquenil. Over the next 8 yrs I would continue to get worse and had to change rheum due to my previous saying there was nothing she could do. I have finally found a rheum that is trying to help manage my symptoms. In 2022 I started with Imuran then Cellcept, both caused a severe cutaneous lupus flare, switched to Rituxinab in 2023 and that worked up until this year. I’m now on Rinvoq, helps with joint pain, but unfortunately this med is causing me to regress with all other symptoms. My rheum is fantastic and is trying to help manage my Sjogrens the best he can.
Im SS-A positive >8.0POS w/ANA Titer that is usually 1:1280. For me this disease is harsh, with fatigue, muscle aches, weakness, and now possible ANS involvement. My suggestion advocate for yourself, if one rheumatologist is not working with you find another, there is no direct treatment (yet) but hope is in the horizon.

@justwannasay ÀSTEPRO works well for this. It is otc.