Sjogren’s Syndrome – Introduce yourself and meet others

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.

Hello.....

I am not new to Connect, as I'm a breast cancer survivor and Connect was a lifesaver for me during my cancer journey. Now I have been diagnosed with Sjogren's Syndrome. It took me over 5 years to get this diagnosis but now realize that I probably had Sjogren's for much longer. It's nice to have a firm diagnosis (but unfortunate to have this at all, of course). My present concern is: Auto Immune Inner Ear Disease...AIED. I'm losing my hearing, have tinnitus, ear fullness and pain and dizziness and lots of anxiety (which makes it all worse I'm sure). Anyone else experience this? Would love to share. Also, since I'm new to Sjogrens would love to share with others on treatments, symptom management, etc. It can be so different for everyone.
My Sjogren's was first detected by an Opthamologist!! I started having trouble with my right eye 2 years ago and 8 opthamologists later, one decided it was systemic and did blood work and an eye biopsy (that was fun!). From there, with a positive ANA test I finally got to a Rheumatologist who got me a firm diagnosis. At this point I have dry eyes, lymphoid hyperplasia of my right eye, dry mouth, swallowing difficulty (which I have had for years and done lots of tests and was told nothing was wrong, except not being able to swallow, ha ha), dry skin, dry cough (getting a CT Lung scan shortly). I have started Pilocarpine and tolerate it pretty well (sweating and chills just after I take the pill). I'm afraid the ear problem will mean prednisone or other drugs and I'm a very bad 'drug taker', I get all the nasty side effects but am willing to try to save my hearing. I have had an MRI/MRA of my brain (I have a brain, all normal so far), have been using Restassis Eye drops for 30 years, OTC eye drops, nasal rinses, lots of lotion, have had a swallow test and other Ear Nose Throat tests and will have more later this week. All was normal a couple years ago, we'll see. I'm grateful to have Medicare now so I can afford this. Cost was stopping me getting this work up done earlier. I'm looking for any/all support. Doctors have limited time and just send you out the door with pills....so these groups are my lifeline. Thank you for the opportunity to share. I will repay your kindness whenever I can.

Oh wait, I have more........sadly........in addition to all the above. I have vaginal dryness and I'm unable to use antibiotics at all now because (well, I'm allergic to all but one class) and they cause immediate vaginal yeast and oral thrush. I'm using Estradiol Cream (relatively safe for a breast cancer survivor with estrogen positive cancer) and Replens. It's a constant battle not to get yeast infections where I have to use Diflucan, which works but makes my hair fall out (sigh). Also, I see that woman, especially of a certain post menopausal age get Sjogren's more often (?)....I'm wondering if it all comes back to hormones.....because I think my problems throughout my life all stem back to unregulated hormones (totally unscientific)....does anyone else have this hypothesis?

@cindylb. I’m so glad that Connect was helpful, especially when you needed it. Now let’s hope we can help again.
There are 2 other members who have talked about AIED. @beckyseattle and @tinea
I hope they’ll join this discussion and help you with answers.
These groups are lifelines, aren’t they? I hope you’ll continue to contribute your knowledge to other members who come along. Will you?