How dry is dry?

[Nathan]

You can still have sjogren's and have all negative tests. Being dry in multiple places would point to that. There really aren't many things that would cause systemic dryness as you describe. Odds are, you're in the boat with many of us, who have negative blood, but still are symptomatic. If your Rheumy is worth his salt, he should be able to help you.

[pixi]

Thank you for your replies guys.

Kathy, I know that uncomfy feeling all too well. I asked the practice nurse if there was something longer lasting than Replens. She said there is nothing prescribed that I can have, but gave me a website to see what I can find. Knowing my luck, whatever is available will cost a small fortune. I'm already paying enough for Biotene products, without having to find the money for other lubricants... I do get the mouth spray and gel prescribed, but they will only give me one of each for a month 


Nathan, My rheumatologist is very good, but I see him for my connective tissue disorder (Ehlers Danlos syndrome) He is one of the few experts in that condition. I hope he is as on the ball with SJS. The main problem I have with him, is he is too popular and my appointments get pushed back for months.

[pudmott]

PIxi

First of all i love your nickname. i have the same nickname at my work. my collegues call me pixie. Of course im not quite as delicate as a pixie. More like an elephant.

Secondly Sjogren's is a connective tissue disease as well. Your rheumy if he is worth his salt will know and treat you on symptoms.

Goodluck

Pud

[trector1955]

Hello everyone.
   
      I have a question for you guys? I am so dry I don't even know my numbers from the test. But my eye sight is so bad. I take restasis it works sometimes but i can't stand not being able to see clearly. It drives me crazy. My family thinks I am crazy I have to pull the TV up close then they say are you blind!!!! I think they forget now hard it is for me to see. I have Been to alot of eye MD doctors some days i can see perfect others i don't want to get out of bed. It is even hard to do house work. oh well my big question is I already take fish oil. but i want to increase it. I see Lesleyjoy takes alot. Do i have to ask the Dr first or just take it. I don't see my rhummy again until Jan. and I have been bugging my reg Dr too much he put me on Lunesta for my sleep habits. and it works great but the ins. compnay gave us a hard time. I kept having to call and get more samples. Well my Best friend is moving to Austria for 3 years so it looks like you guys are my new best friends. I love this site I feel like I know you guys I read the site every day. to see whats new. I am new to the Sjogrens I find it sorta weird. but i am positive. I am waiting for my SS to get approved. I know it will happen just have to be positive it will.
See ya Theresa

[pudmott]

Theresa how much fish oil are you taking? I take 3000mg a day and im sure lesley does the same as well as a few others here. 3000mg is ok to take and should help with your  eyes. Anymore and i would check with your doc

Pud

[trector1955]

Pud
   I am only taking about 1000 a day and 1000 vitamin d thanks for your reply
Theresa

[Scottietottie]

Hi - I take 3000mg fish oil a day and there is someone in here who takes 6000. 3000 does it for me!

Take care - Scottie