Intermittent right side facial swelling

Posted by lisafabs32 @lisafabs32, Apr 22, 2023

Hello 10 years ago my face started to swell up only on the right side - it would happen 2-3 times a year but since January 2023 it’s been happening once a week. It starts in Rutherford my jaw line or under my eye on the cheek bone but always the right side. I have every blood test under the sun I have MRI’s, CT’s and Ultrasounds, all negative.
I have been to Mass eye and ear and Mass General and I have consulted with ENT, Neurologist, Allergist, Dentist and Rheumatologist. Everyone can see the fluid but no one can tell me where it’s coming from or what’s causing it.
I have been prescribed Prednisone 4-5 times since January and every time I finish my script my face flares up again. My ENT thinks he might have seen this once before in his residency… MRS Syndrome and prescribed and old antibiotic called Dapsone wants me to stay on it for 3 months- although it’s not preventing the swelling.
I am so discouraged. Has anyone else had intermittent swelling on the right side only of the face?

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kjoed53 | @kjoed53 | Jul 12 8:15am

I've been having a swelling between my nose and cheekbone on my right side only. It stays for a few days and then goes away and repeats in a few days. I think it's sinus related but I'm not sure. My rheumatologist wants me to see my primary care who wants me to see an ophthalmologist and My prednisone tapering is bringing out all sorts of inflammation that I probably was used to having before I had the PMR.