Sjogren’s Syndrome – Introduce yourself and meet others

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 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.

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.

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.

@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?

Good morning,
I hope i prounouned that right. my sinus doctor who i went to for repeated sinus infections which i have been on like 4 different antibiotics which never really helped. i did have a ctscan of my sinuses he said it only showed mild sinus issues. bigger problem which he referred me to a rheumotologist is for sjorgens syndrome. honestly i was hoping it was just allergy related(which i go through in october) but he mainly referred me due to extremely dry mouth which just seems to be getting worse. i drink as much and a lot of water and non caffeine drinks as i can and i constantly have to drink because my mouth is so dried out, sore throat also(i have no more tonsils) and then yesterday i noticed my glands were a bit swollen and it was almost impossible to eat even though i was really hungry. my rheumotology appt if you can believe isnt until feb. there is no way with all this i can wait that long. i see a new pcp not far from this sinus dr. my husband insists i ask for a mri of my throat and glands i cannot wait. im just gonna try to get through the next 2 weeks. since dr's for the last yr havent listened to me im hoping they will let him in to this appt. i also have hypothyroidism which was out of whack for several months but my levels now seem back to normal. i was also diagnosed with linear endrocine cell hyperplasia with the possibility of autoimmune gastritis but then after that GI blew me off so seeing a new one in boston in nov. i dont have faith in that so i want himto redo all the testing but this swollen glands/mouth thing is driving me crazy. anyone here with similiar symptoms or have sjorgen syndrome? did you have a mri or go to a rheumotologist to be diagnosed? can a pcp diagnose you or do you need to see a rheumotologist? any feedback would be much appreciated/ thank you.

Hi Eileen,
I was diagnosed with Sjogrens due to dry eyes and a referral to a Rheumatologist.
The diagnosis is made by labs and symptoms.
I too have days where my lymph nodes go up but it’s normal with Sjogrens.
I pay attention to my body and slow it down when my symptoms worsen. Hopefully you are using lubricated eye drops; there are mouth washes made specifically for dry mouth also.
You may get in sooner to see the Rheumatologist if you can get your new PCP to call and ask if the Rheum could see you urgently. Looking at your symptoms you really need to get in!

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.

One caution about cevimelene. It increases secretions, including the secretion of stomach acid. It gave me acid reflux.

wow. you sound like me. i have more specialist appointments. several issues healthwise i need to get figured out. its hard because of course there is a wait to see these specialists and its hard .i just noticed the swollen glands/neck the other day. what is the "Evoxac"? i never heard of it. i am trying to do what i can to get by for now. my sinus dr. who i saw last week, at that time i was still trying to get a hold of the rheumotologist he referred me to so he ordered some autoimmune bloodwork. all 4 came back negetive one someone suggested to me its a sjorgens test i guess, ana it was negetive as was Rheumatoid igg, sedimentation Rate (ESR) and c- reactive protein, all negetive. so i know there is probobly more i need done but im baffled whyi have all these symptoms the sore throat with the swollen neck/ throat is the worst.