Living Well with AERD - Cassandra's Message

[@littelt11]

I was just recently diagnosed with AERD I’m three years out from my first sinus surgery…which is when I finally got my diagnosis as well but I have been living with it for 10 years before that with doctors not listening to me I have permanently lost my smell because of it

[@rababhaddad8892]

I have AERD since forever , 20 years , had 7 sinus surgeries , was on Aspirin desensitization for 2 years and currently on Dupixine , each day is a challenge

[@baronimj1]

Have you considered aspirin desensitization? Works great.

[@electromechanicalstuff2602]

Sounds scary to me. I work on a farm I can't be bleeding and bruising all the time. I have been taking lots of Omega 3 lately. And ENT just gave me a sinus powder to try for a few months and it's supposed to reduce polyp inflammation so fingers crossed. I'd rather find a natural remedy. Been using local honey and nettles tea. It's definitely better but still uncontrolled. Random asthma attacks and congestion

[@robllewellyn]

I've had this for 20 years. Only now have I taken the bull by the horns and decided to sort it myself. Nasal wash, cutting the booze, and high dose of curcumin as an anti-inflammatory are my current attempt. Had polyps removed 10 years ago, might try steroid rinse as well soon. Keep going people!

[@shockbonker]

Works for some not for others. I wouldn’t try this as it’s putting chemicals in your body. Aspirin today is not willow as some people think.

[@revathyy4902]

​@@robllewellyn3:51 3:51

[@jimaffinito1809]

I’m 20 years and 5 surgeries in. About to try Dupixent. Acceptance and humor indeed. I burn stuff all the time.

[@shaanchaudhry5719]

Have you been desensitized to aspirin?

[@jimaffinito1809]

@@shaanchaudhry5719 I tried about 10 years ago but it was not helpful. Perhaps I should try again

[@shaanchaudhry5719]

@@jimaffinito1809 what have you done to help restore your sense of smell/taste Jim?

[@jimaffinito1809]

@@shaanchaudhry5719 hi. I never lost my sense of taste, but I completely lost my sense of smell nearly 20 years ago. I attempted aspirin desensitization but had poor results. I’ve had 5 polyp surgeries and have used every nasal spray and wash that I can find. I’m hoping Dupixent will restore my sense of smell but it doesn’t look like my insurance will cover it. Recently had an infection eroded through my ethmoid sinuses in to my eye socket. Definitely at my wits end.

[@shaanchaudhry5719]

@@jimaffinito1809 Without the sense of smell we can never taste the flavor of food. The most we can do is tell if something is salty or sweet. I hate that you have had so much bad luck with the smell. Did you ever get a temporary return of smell shortly after surgery? I’m curious as to why your case is so aggressive. Do you take singulair? Are you allergic to several airborne allergens?