Intermittent right side facial swelling

Hi Lisa! Have you check with your doctor for Lupus? My daughter has swelling face for many years, glands swelling and difficulty swallowing- but her doctors couldn’t figure out. However we researched also she had some other symptoms of Lupus beside the face swelling. She is on Cellcept now that helps the face, glands and swelling going down . She also had Lupus and Sjogren. I hope you check both these disorders to make sure.

Oh my goodness, I feel for you. I have had bilateral facial swelling on a few occassions in the past, but it always went away. Once when I was in the hospital for a long covid situation, the doctor told me it was because I gained some weight--maybe just a few pounds, but certainly not enough to cause the swelling. I now have facial swelling on the lower face, on both sides since October. And lumps on both sides of neck. Just woke up one day and there they were, just like the swelling of the lower face.
CT and MRI scans come up with buccal fat. However no one knows why this happened so suddenly. My weight has actually gone down, so its not the cause.
I see a Rheumeotolgist next week on the advice of an ENT doctor. My salivary glands are fine so its not that. He thinks I may have an auto immune condition. I look like a chipmunk. Also still suffering with profuse sweating. All this after Covid. I pray for a diagnosis and a cure. Take heart, you are not alone, and we can empathize with you.

Are you referring to salivary glands? That has been deleted from my list of possibilities by an ENT doctor that specializes in salivary gland issues. He is sending me to a rheumatologist. He thinks it may be an autoimmune issue.
CT scans say it Buccal fat. Ok so why did it suddenly appear, what do I do to get rid of it. No one knows yet. Please share anything that you have learned about this condition.

Hi @earoll99 , Thank you for your message! I have been tested for Lupus and that was ruled out and also Sjogren's I believe as well although I'll have to go back and check my blood work. I see my ENT this week (Wednesday) and I am going to ask if there is another medication besides prednisone that I can take as it's starting to make me very puffy.
My rheumatologist wants to do his own blood workup and I need to be off the prednisone for at least a week so I stopped today.
I will be back in touch - thank you for your comments and recommendations. I hope your daughter is doing well.

Hi @frking I appreciate your message, thank you! That's interesting about the weight gain as I have gained close to 20 pounds over the last 2.5 years. I'll have to ask my ENT if he thinks my weight gain could have anything to do with this - the prednisone makes me so puffy so between that and my weight gain I am a mess... but the prednisone is the only thing that takes and keeps the swelling down.
I hope you get some answers from your Rheumatologist next week - will be thinking of you....

My 30 year old granddaughter has this swelling along with extreme redness on the right side of her face, with swelling of her throat at times. also. It started in January of 2021. She has severe rosacea and is short, overweight and takes prednisone for 2 weeks each month. I am pretty sure she was tested for Lupus but I don't know if she was tested for Sjogren. She has had other serious issues with her right under arm and a weird, painful, blistery rash that recurs when she is mostly under lots of stress. They never figured out that either. They thought it was shingles for a long time. They think it is now in the bone but is not active at the moment. She is beyond frustrated! I appreciate this community platform and welcome any feedback or ideas any one has! Thank you!

@billjudis I am so sorry for your granddaughter.
Has she seen a neurologist, dermatologist or allergist?
I realize it is beyond frustrating and exhausting to see specialist after specialist but there has to be a doctor out there that can help and give her some answers. I hope she’ll continue to try and find that someone.

We wish you will be found out the treatment. Thanks

Thank you! She has seen a dermatologist but I don't think she has been allergy tested. She has very sensitive skin though. I'm not sure about a neurologist either. She is pretty fed up with all of the doctors and tests but we keep encouraging her. She is a wonderful single mom and works full-time so like a lot of people, she has to look into this when she has time. Thanks again for the response!

I feel her pain and discouragement - I hope she she can find the time and strength to keep searching for answers. Sending hugs.