Autoimmune Angioedema

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H B
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@tafkabhelle
MelkerssonRosenthalSyndrome 4y
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Is this normal for MRS? I’m scared, it is happening more often and for longer periods of time now

#MelkerssonRosenthalSyndrome #AutoimmuneAngioedema

I was tentatively diagnosed with Melkersson-Rosenthal Syndrome back in December because of a swollen upper lip like this with redness above my lips too like this. The middle of my upper lip feels fairly hard too. Like #granulomacheilitis

Is there anything we can do???? Will I just keep getting worse? it’s not an allergy I was tested for everything, and my blood didn’t indicate anything like #Lupus or #RheumatoidArthritis so is this really just a mystery I’ll have to live with? Does it get worse?

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aleyaG
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@aleyag
5y Sent from app

#Fibromyalgia #FoodAllergies #AutoimmuneAngioedema

I want to do what is best for my body...but things always entice me to the dark side! I ate potatoes yesterday AND soy. I am regretting it today as I struggle to be semi-comfortable in my intensely swollen body :(

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Marissa
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@marissaholla
AutoimmuneAngioedema 5y Sent from app

Is there anyone who would like to share their experiences with Xolair (Omalizumab, Mast Cell Stabilizer) treatments?

I am 4 months in on mast cell stabilizer treatments of omalizuab (300 mg/26 days). This is layered over 40mg of Rupatadine daily.
I have a vast amount of systematic symptoms as it took a long time to receive diagnosis....I feel like things are beginning to slightly improve, however the side effects offset this positive improvement, especially in the first two weeks after treatment

#AutoimmuneAngioedema #Urticaria #MastCellActivationDisorder #MastCellActivationSyndrome #MastCellDisease #Xolair #Immunotherapy #Fibromyalgia #ChronicPain #Lymphedema #DemyelinatingNeuropathies foll

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