Does anyone suffer the follow systoms with their Primary Sjogrens?

[Polly1]

I have Primary sjogren's but no dry eyes or mouth. It causes pronounced swelling & irritation to the sides of my face, under my neck & chin where the parotid glands are. It also causes the area over my eyes to appear swollen often as if i have been punched. I do have other systoms but these are the ones i am most interested to find out if any other sufferers have experienced and how they deal with them?

[LesJames]

Hi Polly1

Have you tried this question on the APS forum? as many of them also suffer from Sjogren's

Regards

Les

[Polly1 in reply to LesJames]

APS forum? Whoosh that went straight over my head! Please explain where & how. Oh by the way I can spell symptoms. That spelling error slipped through the net when i post the questions

[Paul_Howard Partner LUPUS UK in reply to Polly1]

Hi Polly1. As coppernob mentions, APS is Antiphospholipid Syndrome (aka, hughes syndrome or sticky blood). There is another community on this HealthUnlocked platform for APS patients. You should be able to find it from the HealthUnlocked home page and searching in communities.

[Coppernob]

You know what APS is, right? Antiphospholipid Syndrome. Not sure about the forum though. Guessing, but would imagine facial swelling could be because Sjogren's is attacking your salivary glands and around that area. And it affects different areas in different people and/or at different times.

[Polly1]

Many thanks, although i have been diagnosed for 30 years this is the first time i have researched into it. In the past i didnt wish to know, just wanted to get on with my life.

[birdladynb]

Have you seen a Urologist I ask this as I have swollen eyes most of the time..especially underneath.

Also, could be possible for cheeks to have parotid (hope I spelled that right) glands plugged. This happens to the right side if my face..you said the sides of your face wereare swollen. Can you feel any smal..can be large hard bumps These, if those glands are plugged could be what is causing the swelling. I know at times I look like a chipmunk with a nut in his right cheek.

Does how much liquid you have consumed make any difference in the swelling of your eyes Again, that would be something I'd mention to your rhuematologist and to a god urologist. Are you on Prednisone That candoes cause that type of swelling in me also.

Hope you get answers soon.

birdladynb

Have't been on site in ages. Shunt to brain after surgery got infected, then fell and broke pelvis due to osteoporosis, then cdiff, now looks like new shunt is needed.

Always something. I see more of my Dr's than of my friends! Although my Drs. are so good and kind that they are a team of friends. I am a "Frequent Flyer" in the hospital & the ER. It's pretty sad when they know you by sight and/or name.

[Polly1 in reply to birdladynb]

Will reply over weekend as I have busy couple of days thank you so much & best wishes.