Sjogren’s Syndrome – Introduce yourself and meet others

I’m not sure how much help this will be. I’m not sure about hair loss from the medication. I was reading last night about Sjogren’s and hair loss as I have been shedding hair for months and is now noticeable when you Google hair looks and Sjogren’s it comes up. Really hoping you feel better soon.

Follow up question I’ve been trying to get to your schedule, but I’m not there yet. Questions though you and those who take civemeline ((sp?) … at times it seems like I have too much saliva, but the saliva doesn’t feel like real saliva. It feels it has more of a mucousy feel I’m wondering what others who take this feel. I thought I read either at this website or this the advocacy site, but this saliva doesn’t protect teeth, is that accurate? My dentist is prescribing fluoride treatment daily. I’m responding to one person, but I’m happy to hear from any others who have Sjogrens and take this medication.

@cblue This information from Mayo Clinic lists the problems and side effects of cevimeline. Keep this list handy because it says which problems are reportable to your doctor.
https://www.mayoclinic.org/drugs-supplements/cevimeline-oral-route/precautions/drg-20062661?p=1#:~:text=This%20medicine%20may%20cause%20blurred,cause%20kidney%20or%20gallbladder%20problems.
From what I have read, when you take cevimeline ,the saliva produced is from your own glands and is no different. It may feel or be thicker—that is why drinking plenty of water is advised.
How long have you been taking cevimeline?

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 . !!!!