Newbie - extra-glandular symptoms only

Hi all, I was wondering if there is anyone else in this forum that has SS without dry eyes or dry mouth or started that way and later developed sicca symptoms?

If you didn’t have dryness in those areas why would you be tested for it?
Just curious?

I wasn’t originally tested on the suspicion of Sjogren’s. I was exhibiting severe bouts of muscle and joint pain along with a lot of other random weirdness so my PCP finally did a few extra blood tests and the results led him to refer me to a Rheumatologist who did additional tests which resulted in high markers for Sjogren’s. This is also something my mother had.

I’m wondering if it’s inevitable that I will develop those symptoms as well or if there’s anyone who has suffered with the other symptoms and not developed the dry eyes and dry mouth. And if it will develop approximately how long into the diagnosis does it tend to occur. I think I started experiencing my issues about 8-10 years ago but the bouts were not frequent enough to appear to be related. It’s only been the past couple of years that things have been flaring up more frequently. First it was about once a year then about every six months then 3-4 times a year and then it got to be monthly/weekly. Before I started Plaquenil every day felt like a gamble; wake up, roll the dice and see if I can walk or function enough to get through a day. Plaquenil has made a huge difference for me already and I know I haven’t taken it long enough to feel the full effects. Since I was also vitamin D deficient the doc had me start taking 4000 iu every day at the same time I started Plaquenil so maybe part of my progress has been due to the vitamins. I don’t care why I’m feeling better I’m just so thankful that it’s happening but I’m terrified it’s going to get bad again or even worse than what I was experiencing before.

Reggie, your story is very similar to mine. I had the joint issues and fatigue for many years before the dry eyes kicked in. That's a big part of why it took so long to get diagnosed, They weren't looking for it and when the standard ra type stuff came back negative, they quit looking. Plaquenil was a life saver for me too, especially with the fatigue. I learned after awhile that worrying about something that may never happen takes away from the joy of today. (and uses up energy I don't have to spare). Talking it out does help keep that feeling at bay.

This is a really fascinating discussion. I have a friend who tested positive for Sjogrens antibodies, but has no sicca symptoms. Why was she tested? Joint pain and fatigue.

I was literally diagnosed Thursday and I am in the same boat you’re in. My doctor tested me on a hunch and the blood work came back positive. I still don’t know very much at all about it. I have however had symptoms connected to SS for about 5 years. I’m so glad I found this group…I’m sure I will have many more questions!

I find it very encouraging that the doctors even know what it is and are testing for it earlier. Yay!

I’m very thankful they decided to test for it. Even though it’s not necessarily the news I wanted to receive it is good to know why I’ve been experiencing these symptoms and that there’s medicine available to help with most of it. It’s also good to hear everyone else’s experiences and know I’m not dealing with this alone.