Sjogren’s Syndrome – Introduce yourself and meet others

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.

Thank you. yes i used to have really bad allergies. im scheduled to be retested for allergies in early october. hardest thing right now is painful throat and swollen glands and especially throat. see new pcp in 2 weeks so i hope so... right now just taking it one day at a time..

@eileenb1022 I’m really sorry that you’re in the middle of trying to find a good doctor. Once you find a doctor, be sure he/she knows that you think you have an autoimmune disease. I kept telling the doctors to “think outside the box.” None of them did, but maybe they learned that they should.

To help your doctor find out if an autoimmune disease is causing your symptoms,:
Learn about the health conditions in your family history. What health problems did your grandparents, aunts, uncles, and cousins have? Write down what you learn and share it with your doctor.
Keep track of your symptoms, including how long they last and what makes them better or worse. Share your notes with your doctor.
See a specialist who deals with the symptoms that bother you most. For example, if you have rash, see a dermatologist (skin doctor).

I know that you have a wait before your appointments, but you can put it to good use. Do as much thinking and planning as you can!
Have you come up with a list of questions for the doctor when you see them?

I have swollen, achy parotid (?) glands on only one side. I'm not even mentioning it to anyone because I have other more serious problems that need to be attended to. It sure sounds like you are doing everything that could be helpful for the dry mouth. The Evoxac has been the only thing I've tried that actually worked. Good luck in finding a solution for relief.