what has happened??? bone dry mouth- never had this like this so long before

[lori]

Hey sjs family,

I have RA and i think my sjs is secondary. recently got an ulcer so had to stop the oral mtx. before i could get onto injectible i got a cold.... sooo anyhow, fri gave myself my shot of mtx and went back to my humira saturday.

i take evoxac and usually just two a day do the job and i have NO problems... however, im not bouncing back!!! only did cold meds a couple days of the cold and teh dry mouth began BEFORE the cold....

got a supplement taht is formulated for dry issues but after two soes realized it had rosemary... not ok for ulcer!!! tomorrow gonna go to a stoe tha carries 100% sea buckthonre oil. I read a Dr. oz post on his site taht talked about Venus Williams and so good ol SJS got some attention.


so i post for
1. to tell yall sea buckthonre oil is suppposed to do the trick- 2,000 mg a day i beleive

2. to ask you folks... ive never had a flare like this- i have no dry eye or pain or any other syuptom... do you all ever get just eh dry mouth and if so how long does this mess last? its very frustrating!!!!

hopeing everyone is enjoying the holiday season

God bless
lori

[soycoffee]

Lori asked

2. to ask you folks... ive never had a flare like this- i have no dry eye or pain or any other symptom... do you all ever get just eh dry mouth and if so how long does this mess last? its very frustrating!!!! ??

Lori, I'll often get one symptom that demands my complete attention. This evening it was a single knuckle of my left hand, that was amazingly painful. I don't know how people with RA manage. I knew that knuckle was the vulnerable spot on my hands; just that it never hurt before.

So are you saying that you knew that SjS came with dry mouth, but not like this?
Not all by itself, not grabbing attention for itself? Yes, I would answer. Now you know; and now I know about RA in as little as one joint!

Home remedy. Either or both of these in combination: lemon juice (diluted) or lemon tea, full strength. Add 1/8 tsp powdered ginger (or just ginger). Drink. It brings back the saliva. Then ask your doctor for Salagen or Evoxac. VERY IMPORTANT. Don't just brush your teeth; don't just floss. Also add artificial saliva, and use Biotene or other products that are designed for dry mouth. Otherwise, your mouth and gums cannot maintain a healthy environment for teeth.

And how do you have Sjögren's Syndrome without symptoms?

Best of luck with your dry mouth. The ginger added to lemon tea will help immensely.
Soycoffee

[lori]

Hi Soy,

I was dx with sjs a year before the RA... yep, had the dry eyes,,,,bad- and mouth ... fatigue...etc. i tested postive bloodwork adn lip biopsy....

i am on evoxac!!!! thats why im like..." what?"

not sure i can drink lemon and  vinegar now b/c i have an ULCER!!! yipee... that makes life fun LOL

gonna get some sea buckthorne today and add it to my mix

already doing biotene  and my dentist has had me on a prescription toothpaste for several years now- Prevident for dry mouth.

just wondering how long a flare can last- never had it like this so long

lori