Sjogren’s Syndrome – Introduce yourself and meet others

Yeah it's awful. Unless I can get in to another one sooner but there seems to be a wait with everyone not ideal when you need to be seen. I have to wait till Nov to be seen by new gastro as well.

Hello Eileen, Evoxac is a medication that helps your saliva glands maintain moisture in your mouth. The generic is Cevimeline capsule. See if you can google it or look it up on Medscape or Drugs.com. You can test negative on all the Sjogren's tests which are pretty much the same ones for rheumatoid arthritis which is called sero-negative rheumatoid arthritis when all the tests are negative but all the symptoms are present. (With all the other medical issues I have, my dear rheumatologist has had the rheumatology department in our health system eliminated therefore his job. What's going on with our medical system?)

Hi,
oh ok. do you get that med from your rheumotologist? while i wait my appt isnt until february nless my new pcp can get me in somewhere else. can your pcp do anything to help?

Hello again, My rheumatologist or my dentist have both given me a prescription for it. The dentist has supplied when I didn't have a rheumy since a dry mouth promotes tooth decay. My PCP is worthless and I'm hoping when the dust settles down with the current shakeup, that I can switch to a far better PCP (if I can find one accepting new patients.). Present doc wouldn't be helpful at all when it comes to rheumatology knowledge and proper care.

Oh ok/ well i am hoping new pcp can at least reder me to a rheum who has appointments before february. someone mentioned to me a really good pcp in the area. and he isnt taking new patients until dec but i booked with him anyway just hoping pcp i see next week is ok for the time being and can help me with at least some of the different health issues i have going on.

I am waiting to see a Rheumatologist next and apart from everything I think I may have Sjogrens. I have had to use Restasis twice a day for many yrs now,I have constant dry mouth which wakes me through the night more than once. I also have to use nose spray for dry nose. One of the things I'm going to ask and I'm glad you reminded me is about is the unbearable pain I get up behind my ears and down my neck mainly the right ,it's tender to touch and I get it every 6mhs and it lasts for around 6 weeks. It seemed to start with an ear infection.

Thank you for these resources. They are very helpful. I have signed up for the Sjogren Foundation conference on Sat., Oct. 15 to see what I can learn, because I suspect that Sjogren is what is ailing me and perhaps I'll learn something about how to deal with symptoms and back into whether my guess of the diagnosis is correct as it has not been confirmed by the many rheumatologists I have seen, my primary physician and so far 3 neurologists. None of them have looked for it thoroughly. It's very frustrating. Again, thank you for these helpful resources.

You are very welcome, and I hope they are helpful. I am seronegative and had exhausted local resources that were only looking at blood work. Flew to Mayo and they did several different biopsies, and they were all positive. Best Wishes:)

Thank you for your wishes. I'm looking forward to the educational session by the Sjorgen Foundation.

I have attended several of the conferences and they are usually very good and worth the money. Decided to pass on this one as I have information/knowledge on the topics already....I posted the information below in case others read this and want to know more about the conference.

.At this year’s Fall conference you will hear from experts on these key wellness topics:
Physical Impact of Stress & Relationship to Sjögren’s Symptoms
The Effect of Sleep Disturbance on Pain and Mental Health
Nutrition Planning for Autoimmune Health
How Exercise Can Reduce Fatigue and Ease Inflammation