Sjogren's Syndrome Support Group

I was curious on how many of you have primary sjogren's. My rheumy said usually sjogrens is a secondary condition to another RA problem such as lupus. In my case it is the only auto immune disease i have besides fibro which i don't think is ra related but i could be wrong. He said it is unusual that sjogrens would be a first condition. Maybe i am built weird

lol. But i am very curious as to how many of us have it as primary any responses would be great.

kellylynn

Kellylynn,

I have primary sjogren's along with fibro also. I was told that it is odd and that's why rheumy wants to keep testing to see if something else shows up because thats typically what happens. Maybe we're not the typical cases or maybe something else will pop up. Ugh. I hope not because primary sjo, fibro and PCOS is reeking havoc on my body! I'm a wreck laced in anxiety and full of pain!!!! take care

I have primary SS & hypothyroidism. My Ruemy mentioned Fibro but i havent been DX with it.

Hi there...I have primary SS also, along it's cascade of other issues it has caused:

severe interstitial cystitis

fibro

vulvadynia

I never test positive for any other autoimmune disease other than the SS. My rheumy said most of her primary SS patients have fibro as well.

I was told I have primary Sjogren's as well. Not Fibro though. I have seronegative RA. Oh, and I was told last week that I have 'rampant' severe osteosporosis, as per my last bone density test. I had one almost 2 years ago, and it was completely normal. (!?) Now I know why I feel like I am 80 yrs old.

Post edited by: gemini2, at: 02/02/2012 08:35 AM

Hi Kellylynn,

I have Sjogren's Raynauds Celiac possible Scleroderma and probable lyme.

From my understanding if you have one autoimmune problem you have more they often come in 3s.

I have primary SJ, and so does my brother; SJ is always rare in men, esp primary SJ.

Recently my Rheumatologist also said I have Fibromyalgia.

Oh well. LOL

Wow, that is rare for a man. I now have hypothyroidism to add to the list. Some people develop this later on, and many don't. Sjogren's is very different in each of us. The only thing that I can see everyone shares is the dry eyes and mouth. It can be systemic for many, attacking our organs-- and it's awful without a strong support system.

I wish you both all the best.

Take care.

I have a positive ANA for Sjogren's, Lupus, and Scleroderma but no symptoms of any of them except peripheral neuropathy -- was prviously in excellent health with no diabetes etc The blood tests were ordered to try to figure out the cause of my foot pain. Can you have a positive ANA without symptoms of the disease?