New Sjogren's symptoms

[klshow]

I was diagnosed with Sjogrens two years ago but up until recently, I only experienced mild dry mouth and eyes and it was more of a nuisance than anythhing. Recently, my mouth is numb after eating just about anything and after speaking for long periods of time. Also it's worse at night. Plus, my submandibular salivary glands swell up and hurt. I'm also experiencing an increase in numbness in my extremeties. Is all this normal? Why would my Sjogren's symptoms all of a sudden start worsening? I guess this is what they mean by a "flare up."

[persnickety]

I have Primary Extra-glandular Sjogren's.  I am one of those rare ones that now have chronic auto-immune pancreatitis which I almost died from.  My right parotid gland is always swollen and has been for years.  I have extreme dryness of eyes, throat/mouth, nose and sometime the tender parts.  I have extremely dry skin, have neuropathy and numbness too which keeps changing which is part of it being neuropathy and vascular problems.  It is part of it as you call "normal" and yes your Sjogren's can all of a sudden worsen for different lengths of time with flare ups and at any given time.  It is always changing in symptoms.  The brain fog thing is part of it too.  

The best sight to go to is the US site called "Sjogren's Syndrome Foundation".  They tell you absolutely everything you need to know about Sjogren's in detail and extensively.  It is the only site out of all of them that actually is extensive.  Most sites like the "Mayo Clinic" and others like it only touch on the fact of the two minor symptoms of the dry eyes/mouth which drove me crazy in basically righting it off as a very few symptom, liveable condition to live with which is a lie.  

Rarely, you can die from it with extra-glandular rare extensive organ problems.  I had a pseudo-cyst from my pancreatitis that almost took my life.  But, most people don't have it to this extent.  It is usually a secondary condition to other problems already existing as you will read on the site.  You seem to have it possibly also as "primary" if you don't have already other major conditions such as Lupus and such and may not be extra-glandular, not involving organs either. Hopefully is the case...

[persnickety]

I was just curious, the 3 drugs you are taking for the autoimmune stuff you mention (Planquenil etc.), what is each one for in particular.  I haven't been prescribed any one of them and would like to know what they are actually for.  Please post reply, would really appreciate your answers and experience.

Sincerely,
Keeley

[OldFatChick]

I was only diagnosed this year, but apparently have had it for a while.  Sounds like you are in a flare.  My submandibular salivary glands aren't swollen as much as my parotid glands (the ones in front of your ears) .  They are really fat. I look like a hamster with it's jaws full of food, lol.  Yep, the symptoms can stay the same, worsen or you can go into remission.  Are you on any meds?  I am on Plaquenil and Evoxac and Naproxyn for the autoimmune stuff, plus I am on Levothyroxine for my thyroid.  Sjogren's symptoms, like all autoimmune disease, can be difficult to diagnose because the symptoms can vary from day to day, and because no two people are going to have the exact same symptoms.  I suggest Googling Sjogren's Syndrome and researching as much as possible.  Also, keep a  notebook with all your symptoms and questions you want to ask your doctor.  If you are anything like me you have brain fog and can't remember everything.