Sjogren’s Syndrome – Introduce yourself and meet others

@eileenb1022 I’m sorry if MCC caused some confusion for you. @colleenyoung DID move your comments to an existing discussion that is about Sjögren’s syndrome. You will be able to meet other folks who have sjogren’s and get good information.
I’m glad you feel more hopeful about your new doctors. It is so important that you feel heard and validated. There is so much new information about autoimmune diseases and so many new diseases, that the doctors are still learning. I saw a new neurologist yesterday and when she saw my diagnosis, she said,”wait, what is this? I’ve never heard of this before!” It gave me an opportunity to educate her.
Can you keep some good notes on what is happening and focus on the sjogrens?

@becsbuddy im glad you got my post and i didnt have to start over. yeah my sinus dr the hospital next to him rheumotology can get me in until feb. no way can i wait that long. new pcp who i see for the first time isnt for 2 weeks. but i just messaged my sinus dr's nurse to see if he could send a referral to this other rheum where my pcp is. its in the same city. she said something about out of network which i dont understand she said it wouldnt hurt me to wait another 2 weeks. sigh. it is for me. but this other rheum said i could probobly get in before feb so now seems i have to wait and hope new pcp will hear me. im doing the best i can thank you. id love to hear from others just for the support and to see if they have similiar symptoms. 😉

@eileenb1022 Be very careful if you’re told that a doctor or hospital or whatever, is out-of-network. This means that insurance doesn’t cover for the visit or treatment and it can be terribly expensive!
See if there are any large medical centers or university medical centers in your area (even if it means a drive). That’s what i had to do. No one in this town knew how to handle my autoimmune disease, so we went to the university medical center. Some of my visits are virtual and some in person. Another mentor drives 2-3 hours!
Do some investigating, don’t settle! Think you can do that?

this place is a drive. 2-3 hrs. where i live for a yr i lived in the er. i have to travel to a neighboring state to a city, boston that has better healthcare. this rheum isnt out of district for me just the sinus dr for some reason even though they are in the same city. new pcp is in boston a 3 hr drive and im hoping she will send the referral. sinus dr cannot but i had to get a marketplace insurance to be seen in boston unfortuently the agent that signed me up wasnt honest and its only a limited insurance at least until nov 1. so im responsible for half the bill but i have to do this. i also have GI issues alot of issues it seems like its been a domino effect since my gallbladder came out in jan. GI here dropped the ball on me left me with a {"supposed biopsy finding" then nothing so seing new GI in boston in nov so he can do what this other GI didnt. oh yeah alot wrong with me its just so overwhelming!

I was diagnosed with Sjogren's several years ago by my rheumatologist. All my mucous membranes were exceedingly dry especially my mouth to the point that I could barely talk. She prescribed Cevimeline (Evoxac) 30 mg twice a day. It resolved the problem. My dentist now prescribes it for me since without it I probably wouldn't have my own teeth by now.

iassume you get that from a rheumotologist? i cant get into one until feb. hoping after i see my new pcp end of the month she can refer me too one who can see me sooner. currently tips i got was gargle with biotene which i started yesterday, i was using listerine which probobly only made it worse, stop my flonase and other antihistimines which i did im only using saline spray. eating soft foods which is limited. is post nasal drip part of this cause i have had that since almost the time my symptoms started 6 months ago. any other tips you could give me that would help? thank you.

thats what worries me. the dryness i have, post nasal drip. i cant get into the rheumotologist my sinus dr referred me to until feb. see new pcp but not until end of month hoping she can refer me to another one. there is another one i called same city but sinus dr is affiliated with this hospital so he cant refer me his nurse said its only another 2 weeks till you see your pcp so i will try to get a referral from her even though it is my first visit with her. what can i do until i can get some help? also havent been to a dentist in years

I'm so sorry that you are in a difficult situation with trying to find medical help. I am also in that same position having a PCP who is pretty much incompetent and uninvolved in patient welfare. Alternative methods to control dry mouth are chewing sugarless gum, sugarless candy or cough drops and using a Neti pot to keep your nose hydrated and cleansed. Best of luck with your upcoming appointments. I hope you find some needed advice in controlling the problems.

Thank you and thank you for the tips. I'm sorry you are dealing what I have regarding pcps. I have been through the same thing for over a yr
New pcp I see in 2 weeks is about 3 hours away in Boston. Hoping she will be better. I have a humifier running, laying down, using saline spray and biotene mouthwash. Someone recommended that. She suggested I stop using antihistamines but it is hard. I do have a nettipot. Been sucking on cough drops. I appreciate your post. I hope you too find a pcp that cares. I know it's not easy. Do you have problems with swollen glands and throat? That's what scares me the most. Had gallbladder out this past January since then its been like a domino effect with gastro and autoimmune problems.

Eileen — yes, Plaquenil is prescribed by a rheumatologist. Post nasal drip might be due to allergic reactions. I hope you doctor is able to help you. Sjögren’s is a challenging condition.