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lily2013 (@lily2013)

Facial Swelling - no diagnosis

Autoimmune Diseases | Last Active: Apr 20 2:13pm | Replies (158)

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Hello @lily2013 — welcome to Mayo Connect. I’m glad you found us and I’m hoping another Connect member that has had similar symptoms will see your post and respond. I have no medical training or background but there are so many autoimmune diseases out there that it sure sounds like a possibility. I have polymyalgia rheumatica (PMR) and the drug of choice is prednisone. I’m in my second occurrence of PMR and the first time it took me three years to taper off of prednisone, the last six months going back and forth between 1 mg and 1/2 mg dose until I could be off of the drug and not have the associated pain that comes with PMR. The PMR went into remission for 6 years and popped up again a little over a year ago. Both times I was started on a 20 mg dosage and tapered by 5 mg a month unless I had pain when tapering then I reduced the tapering amount by using 1 mg or 2.5 mg tablets. I’m wondering if the swelling goes away when you go on prednisone maybe you just have to taper slower until the see how long it takes or how low a dosage it takes before the swelling is gone.

I don’t know if it’s a possibility but Mayo Clinic uses a team approach with a team of specialists and are very good at diagnosing hard to diagnose health problems. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63.

I thought you might find this video interesting since it’s about trying to figure out what is causing a health problem:

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.



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Replies to "Hello @lily2013 -- welcome to Mayo Connect. I'm glad you found us and I'm hoping another..."

Hi John,
Thanks for sharing your thoughts and experience on prednisone with me. It’s scary how effective 10 mg is when it comes to alleviating the swelling in my face. Presently I am at 5mg daily and that just barely keeps it at bay. I’m going to try and contact the Mayo clinic for help as I don’t know where to go from here. I wish you the best with your PMR hoping you can be pain free soon!

Hi @lily2013,

Thank you for sharing your history; I can only imagine how stressful this must be! I’m tagging @momij @cahnny who’ve posted about “moon face” or facial swelling you’ve described, and I hope they return with some information that might help.

I certainly don’t wish to add to your worry, and I’m glad that you are thinking of contacting Mayo Clinic, but I’d also encourage you to read this information about Cushing syndrome: https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310
I’ve copied some details for your convenience:

“Cushing syndrome can also occur when your body makes too much cortisol on its own. Too much cortisol can produce some of the hallmark signs of Cushing syndrome — a fatty hump between your shoulders, a rounded face, and pink or purple stretch marks on your skin.
Diagnosing Cushing syndrome can be a long and extensive process. You may not have any firm answers about your condition until you’ve had a series of medical appointments. Your doctor will conduct a physical exam, looking for signs of Cushing syndrome. He or she may suspect Cushing syndrome if you have signs such as rounding of the face (moon face), a pad of fatty tissue between the shoulders and neck (buffalo hump)…”

@lily2013, if you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments