Hereditary Angeoedema!

My endo feels that I may have hereditary angioedema and wants me to bring it up at my mayo clinic appt on feb 10th.  Have any of you been diagnosed with this and if so, how have you been since treatment?????? 

Hi zots, thanks for visiting the allergy forum :) I can't answer that question but hopefully you will get a response soon. Where do you get your swelling? Not in your throat I hope! Do they have a special test to see if this is the case?

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**Sherry**
Diagnosed with Ulcerative Colitis in 1992
Meds currently taking: Colazal 750mgs-9 daily
Uc status: Mild flare?
Diagnosed with Secondary Raynaud's Syndrome in 2004
Meds currently taking: Niacin 650mgs-1 daily
SRS status: Very active.....give me 100 degree weather and I'll be happy!!!!!
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Hi Sherry

I get the swelling mostly in my hands, feet, and gums.  on occassion i have had rapid, severe swelling of my soft pallet.  its like someone took a balloon and blew it up.  it happens in a split second.  its pretty weird, painful and scarey.  i guess there are specific tests although, i have no idea what they are.  i havent really even had a chance to look up the illness.  i just know it sounds very frightening.  :(

Ok, went to Mayo Clinic and got the skinny on what the problem is.

i am NOT allergic to the meds, I'm ODing on them.

in my liver, kidneys and large intestines, the genomes that are responsible for medication absorption have mutated and no longer work. so basically, i OD. this is how it was explained:
a normal person will take 500mg or an antibiotic. the liver filters out about 400mg of that medication and your body only receives about 100mg of it. my liver, on the other hand, filters out about 50mg of the medication and body recieves about 450mg of that medication. so depending upon the meds, anywhere between the 1st and 4th day, i am ODing. theres no cure but with research coming out of france there may be something to go on in about 2-5 years.

at least we have a starting point :)

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What a mighty God we serve!  :)