Autoimmune Angioedema

Feed
Contributors
Join the Conversation on
Autoimmune Angioedema
149 people
0 stories
3 posts
  • About Autoimmune Angioedema
  • Explore Our Newsletters
    • What's New in Autoimmune Angioedema
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    H B
     • 
    ·
    @tafkabhelle
    May 7, 2020
    See full photo

    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?

    2 comments
    Share this post Share
    Save
    Post
    aleyaG
     • 
    ·
    @aleyag
    November 19, 2018 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 :(

    1 comment
    Share this post Share
    Save
    Post
    Marissa
     • 
    ·
    @marissaholla
    November 12, 2018 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

    13 comments
    Share this post Share
    Save