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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thisisstupid123 | @thisisstupid123 | Jan 26 5:13pm

I had one sided face swelling for years but only lasted 2-3 days about every month or so. Went to every dr possible and no one knew what caused it . Finally went to National Jewish Health in Denver, CO and saw an immunologist. After several visits, tests, etc she recommended an Xolair injection which is for asthma & hives (neither of which I have) Well the injections work!!! I’ve been getting 2 injections every 4-5 weeks for over 7 years! They cost $6000! Each visit. My insurance covers or I wouldn’t be getting them. My face no longer swells. If I go for shots at 6 weeks there is slight swelling but nothing like I had (looked like I had a golf ball in my cheek)

hammock117 | @hammock117 | Feb 22 7:52pm

I have the rightside cheek swelling up which is new, ultrasound shows clinical concern...radiologist. I am waiting to see the Dermatologist that ordered it. Eye is swelling today.
Autoimmune is not for sissy's. Stay strong and count your gratitudes.

tgbryant15 | @tgbryant15 | Feb 23 9:55am

I have the same thing happening to me. Did you ever get a diagnosis. I have been to a ENT, Allergist, Dentist, GP and nothing has been diagnosed. Prednisone is the only thing that takes the swelling down, The allergist did blood work but said it didn't show any allergies or autoimmune disease.