Chronic Ideopathic Angiodema

Posted by pooba4 @pooba4, Mar 23, 2019

My face has seen swollen for over 2 years, particularly in my forehead, around my eyes, and cheeks. My vision is affected. All blood tests and allergy tests have come back normal including 5 CTs. They say it isn’t SVC or Cushings. Methotrexate, cyclosporine, xolair, zyrtec, singulair, ranitidine, topical steroids, and injected steroids have not helped. The only thing that has ever helped has been oral steroids.

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Ethan McConkey, Moderator | @ethanmcconkey | Mar 24, 2019

Hi @pooba4 and welcome to Connect! That facial swelling must be awful, and so frustrating to find little successful treatment.

I wanted to tag fellow Connect member @lily2013 as she has experience with facial swelling as well and may be able to offer you support.

While we wait for other members to join in, have all your symptoms improved when you are on oral steroids?

pooba4 | @pooba4 | Mar 24, 2019

In reply to @ethanmcconkey "Hi @pooba4 and welcome to Connect! That facial swelling must be awful, and so frustrating to..." + (show)

No, my symptoms did not totally go away when on oral steroids, but it has been the only thing that has helped. Unfortunately, I have no way to obtain any more. After realizing they help, I had asked about trying an alternate day or alternate week schedule, but my doctor didn't agree. They reduce the amount of swelling, take away the redness, and help my eyes be less watery. I believe that because of the swelling, the shape of my eyes has been changed in such a way that normal tearing throughout the day cannot exit through the tear ducts. This results in a white crust appearing on my face throughout the day as the tears drip out. I went to an eye doctor who tested for blocked tear ducts. They are not blocked when he squirts a solution into them. Also, I get a rainbow halo around lights at night because of the moisture in my eyes that would normally be allowed to leave without swelling.

pooba4 | @pooba4 | Mar 25, 2019

I wonder if it’s Morbus Morbihan plus Ocular Rosacea. I found out about Morbus Morbihan on a webpage about diseases that mimic angiodema.

pooba4 | @pooba4 | Apr 3, 2019

Yes, biopsy taken, it is Morbihan Syndrome. I will be starting Isotretinoin.

dsc | @dsc | Apr 19, 2022

Has anyone found anything that totally removed swelling?? Does a change in diet help??

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