Sjogren’s Syndrome – Introduce yourself and meet others

Hi thank you for starting this thread. I don't know if I have sjorgens yet but if I don't I'd be shocked. I see a rheumatologist at the end of February. It was actually my sinus doctor that mentioned sjorgens to me last summer
I never even heard of it. I'm also seeing the rheumatologist for fibromyalga I'm pretty sure I have it it started lastnyear as well shortly after my gallbladder surgery and has just progressed anyway I'd love to talk to others. My sinus dr did do about five antibody sjorgens bloodwork which were normal. My throat though couldn't possibly get more dried out. Then shortly afterward few months ago my eye Dr diagnosed me with dry eyes. I think I have silent reflux too so my mouth/ throat is really a struggle. Thank you for listening.

I’m also getting a Sjogrens work up. I had a salivary nuc med scan that showed my left salivary gland isn’t working correctly. I understand what you’re experiencing. Everything is dry. Can’t swallow food without liquid. I have a lip biopsy tomorrow. This would be my 5th autoimmune disease. I’m nervous! And exasperated that I might have another. Thank you for hearing my rant.

oh anytime! like i said before last summer i never even heard of sjorgens and grateful to my sinus dr for suspecting it but yes mouth is so very dry. constantly having to stay hydrated. iif not my mouth is so dried out. i swear its like no saliva. really eager to see rheumotologist. thanks for writing!

Chapstick is my friend. I have tubes everywhere coat pockets, next to the recliner, in the car, by the bed, in the bathroom, purse, by my computer....you get the picture. I apply it all day long about every 20 minutes. Finally tried a product called SuperLan. What a difference it has made. Just ordered more!! It stays on my lips (is not stinky) --lanolin is now my new best friend. For vaginal dryness I use Intrarosa vaginal inserts. OBGYN prescribed them....she said this is what I use.

I’m sorry I’m so much pain. What does your rheumatologist prescribe for you?

Has anyone heard about a link between Sjogren’s and the risks of developing lymphoma ?

@margar1, Here is some information on the topic...

"Sjögren's syndrome is an inflammatory condition resulting from an abnormal immune system response. Along with causing symptoms such as dry eyes, dry mouth and joint pain, it can increase the risk of non-Hodgkin's lymphoma (NHL), a cancer of white blood cells called lymphocytes."
-- Non-Hodgkin's Lymphoma with Sjögren's Syndrome
https://www.arthritis.org/health-wellness/about-arthritis/related-conditions/other-diseases/non-hodgkins-lymphoma-with-sjogrens-syndrome

Thank you!

Hi, I hope this finds you as it's an old message board. I have Sjogrens as well, Erythromelalgia, and a host of other issues and they're frustrating, painful and it's saddening me. I too, was living and working in NYC on 9/11, remembering that day isn't what I need to do. Didn't address the ptsd with anyone else for 21 years. It was brought about by my diagnoses and the direct correlation to the dust. I was downwind, Boerum hill, and also commuted through lower Manhattan to get to my job, on 5th, 49th. I couldn't get that smoke out of my body. Or home. I'd blow my nose and it was just black soot. Hon, I wish you well. I'm in Maryland, went to work at wash hosp center in Dc in 2010. I feel alone being out of state. I'm with Hopkins now. Peace and blessings

I was just diagnosed by my new rheumatologist Thusday (2nd visit, going over labs) with Sjogren's. Although no surprise, have had symptoms to a varying dgree for several years. To date I have Crohn's (40 yrs) PMR (6yrs) now this. As my rheumy muttered "You may be more complex than I thought...". I guess so. I am also very low IGg and need a biopsis for small fiber neuroathy. Is there a comment group for that? So much to learn... BTW: I am HLAB27 negative, always wondered.