Sjogren’s Syndrome – Introduce yourself and meet others

Thanks for following up. I've been taking cevimeline since mid-October. I found the same Mayo Clinic warning you did. So I reached out to my rheumatologist. Long story short, doctor said nausea is uncomfortable, vomiting I should be concerned about ;. to rule out concern, I would probably need to go to an ER. Nausea began middle of night i think and continued till evening today. I've stopped taking it for today. I guess I can start tomorrow again (based on the doctor's brief posts to my questions).
In terms of what yo are reading - that it's our saliva.], that's great news --assuming you have a reliable source. Where did you find this research? - I just googled information about the medication etc.. and found some information I probably did not save ;and don't know if it's reliable. The info suggested that the saliva produced is not adequate to protect my teeth- as did my dentist. I was hoping to look over research at some point. Thanks again!

Please help me too! I have dry eyes, dry mouth and throat, ear pain, and spinal degeneration…. Teeth problems… TMJ dysfunction and cartilage is gone! Esophageal dysmotility , and stylohoid ligament calcification…dysphagia…etc… have been diagnosed with Hashimoto thyroiditis… positive ANA, and antzic4 antibody… (no neoplasm) … negative Sjogren antibodies…. I need a doctor willing to do the biopsy… Who can perform the salivary gland biopsy??? Most doctors settle for only antibodies testing… Please help! Thanks!

@cblue this site from Mayo Clinic says pretty much the same thing; that cevimeline stimulates your own glands to produce saliva versus artificial saliva which many people have to use.
https://www.mayoclinic.org/drugs-supplements/cevimeline-oral-route/side-effects/drg-20062661?p=1. Your dentist says the saliva produced is not adequate to protect your teeth. Have you asked him what he would suggest you use in addition to cevimeline?

I am relying more on oral pathologist. Mostly same thing I've seen other places. Careful brushing regimen, including floss. Once a day use prescription tooth paste, more frequent cleanings with dental hygienist (not all can afford this).. possibly a flouride treatment at each dental cleaning at the office.
What has been others experience.

I'm not sure where you live, but usually medical centers have oral pathologists. I 'm in NYC where Columbia Presbyterian has one. Long list for main center, but able to get a fairly prompt examination at a satellite outpost for salivary flow (inadequate)-> led to biopsy and diagnosis.

I had sjogrens long ago. It took a very long time to get a correct diagnosis. I did eventually overcome it!

I would love to hear more about how you overcame it. I was not diagnosed until I was older and I don’t think I had it when I was younger, which is when most people get it in midlife I think if I read correctly, I would very much appreciate hearing how you overcame it, and how long it took, it might give some of us hope. I don’t know how many personal details you can share, but if you can give us a vague idea of the age you were diagnosed / or began to have symptoms, and then again how long it took and what worked . !!!!

I'm on cevimeline and all it's doing right now is producing an unfortunate side effect of cold sweats. Has anyone has success on this medication?

I take 182 mcg of K2 MK7. It is for osteoporosis but I have noticed that my saliva production has increased. Then I watched this video about K2 and the doctor briefly discussed dental benefits of K2, https://m.youtube.com/watch?v=z3njgh2nFRk. Coincidence? Maybe, but I’ll take it.

Let me clarify, it’s vitamin K2 in the form of MK7.