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Intermittent right side facial swelling
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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I have had my left side of my face swell into a very hard painful mass - it would take hours to subside. I was diagnosed with a blocked salivary gland. I had two unsuccessful surgeries to put a stint in to stop the blocking. My episodes have lessened in occurrence and do not get as large anymore. I put a heat pack on it when they do happen and keep rewarding it until the pain is gone.
Good luck with your swelling and I hope you find some relief.
Jackie
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1 ReactionHi Jackie
I appreciate your reply, thank you.
I saw an ENT and had an ultrasound of my glands and it’s not my glands that’s causing the swelling. I’m hopeful I get answers soon.
Stay well!
@lisafabs32, has Melkersson-Rosenthal Syndrome (MRS) been confirmed or ruled out yet?
- Melkersson-Rosenthal Syndrome: https://rarediseases.org/rare-diseases/melkersson-rosenthal-syndrome/
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1 ReactionHi Colleen,
Unfortunately, and this is according to my neurologist, there is no way to prove or disprove MRS Syndrome.
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1 Reaction@lisafabs32 I’m so sorry that you’ve got this syndrome. Do the doctors think it could be autoimmune? Many of us in this support group have diseases with very nebulous symptoms but we’re all treated with prednisone and other drugs. You say you’ve been to a rheumatologist but still no answers.
Do you think this rheumatologist would be willing to do a little research and try some of the autoimmune drugs? Think you could ask him/her?
Will you keep me posted on what you learn?
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2 ReactionsHi Becky,
Thank you I appreciate your reply. Yes, my doctors believe it is autoimmune. I am seeing a new Rheumatologists on Monday as he comes highly recommended - I will see what he has to say and ask if he is willing to to try some of the autoimmune drugs. Thank you for that recommendation and will most definitely let you know.
I am on 3 months of antibiotic per my ENT and I am also on a migraine medication that the neurologist suggested because when my face swells it comes with a head ache. I think the doctors are just all trying different things and medications to see what works but so far the only thing keeping the swelling at bay is prednisone. My last does this round was on Monday and my face is starting to swell up again tonight - I'm so discouraged.
Thank you again for your message Becky - it all helps.
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1 Reaction@lisafabs32 You went to see a new rheumatologist on Monday of this week. Did they have any news for you? I’m anxious to know!
Hi Becky,
I saw the neurologist he does not believe it’s a neurological issue. He wants me to get off the prednisone for a week and wants to do his own blood test which I’m going to do.
He’d like me go to emergency room for an emergency CT Scan the next time my face is fully swollen.
I will keep searching for answers and keep you posted.
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3 ReactionsI have had the left side of my face swell several times over the last 5 years. Once 2 years ago I had an ER doctor research this. He came up with Sjogrens autoimmune syndrome. Since the my Rheumatologist has confirmed it. When I get the swelling they prescribe prednisone.
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1 ReactionHi @burlingtongirl I’m glad you finally got a diagnosis. I’m my case, Sjögren’s syndrome has been ruled out but I am going to bring this to their attention again just to confirm.
It’s so frustrating… every time I stop the prednisone the right side of my face swells up. I am desperate to find an answer and to get off the prednisone.
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