Lucky newbie

[wallaby]

I have been having dry mouth/eyes/lady area for a few months now.  My primary physician referred  me to an ENT as she seemed to ignore all my complaints except the dry mouth.  Thankfully I had seen this Dr. before and he knows I am not a kook.  He listened to all my symptoms, agreed that the lip biopsy was painful and often inconclusive.  As of right now I am SSA/SSB negative, so he is calling it Sicca, while saying that I may well test positive in the future.  Apparently my mouth looks like I have been having radiation therapy, so he prescribed me Salagen to try for a couple of months and also wrote me a prescription for Evoxac in case I couldn't get on with the salagen.  So far it seems ok.  It kicks in quickly last for a couple of hours then I am dry again until the next dose.  I am hoping that as I keep taking it that this will improve.

I do have a couple of questions.  Has anyone here had SJS/sicca symptoms start after having surgery or immunotherapy(allergy) shots?  Just looking to get to the root of the cause.  Really hoping it's not the allergy shots as I am free from headache and sinus issues for the first time in years.

[Bucky]

Hi Wallaby,

Welcome to the family.   

I don't believe doctors really "know" what causes or triggers Sjogren's to rear it's ugly head.  It's like putting a bunch of "maybes" into a hat and pulling one out.  For myself, I often wonder if going thru the menopause triggered it?!  Although, I imagine I had this lurking in my body long before that ever happened.

Have you seen an Ophthalmologist for your eyes?  He's another one of the doctors that will work with you and your "Sicca" diagnose.

There's lots of information on this forum.  If there is something in particular you are interested in, if you put that key word in the search box in the top left it will take you to previous posts about that subject.  If you don't find what you're looking for, you can always post something.  We have members literally from around the world, so someone is here at almost any given time.

Welcome,
Bucky

[Scottietottie]

Hi wallaby 

welcome to Sjogren's world. I concur with what Bucky says. I hope you find the forum useful.

Take care - Scottie 

[Patze]

Hi Wallaby,

Let me also welcome you to the SJS World and family!  As Bucky said, please do look around as there are just tons of topics and oodles of information that you might find interesting.

Oh boy, does your story sound oh so familiar!  For me it started with getting my hypothyroid diagnosed as Hashimoto's for doctors to start listening to me.  I was lucky to get a rheumy that started me on Plaquenil on symptoms alone, and when she left the area, the next rheumy continued me on Plaquenil. 

I am also diagnosed with SICCA, but that's okay, I'm still being treated as though I'm positive, and hey,  SICCA is a diagnosis too.  Now to get these darn dry eyes under control! 

Take care -

Patze

[lynnmarie219]

Hi Wallaby and Welcome to Sjogrens World!

There are many people here who have not been "officially" diagnosed with Sjogrens but carry that SICCA diagnosis instead...its kind of an in between diagnosis before Sjogrens can actually be "proven" through labs/lip biopsy/eye tests. It just means that you have dryness symptoms so as long as the doctor is treating you...its all good!

Its also good that he gave you the salagen with the evoxac prescription for a back up. I use salagen as well and can take up to 5 tablets a day as I need it....its a good drug if you want to control how and when to take it...its fast acting but not long lasting as you said! Its also cheaper that Evoxac... .

Feel free to come here often and read all you can and ask any questions that come to mind.....we are glad to have you join our family here!