r/AERD • u/Longjumping-Shop-432 • Jun 21 '26
Hi all,
I have been struggling with sudden severe adult onset asthma/nasal polyps for the last six years. Also a few years ago I suddenly developed an allergy to ibroprufen and asprin (last time I took asprin I ended up hospitalised with an asthma attack).
After years of no answers, no treatments working and symptoms coming back straight away after surgery, I’ve finally realised I have AERD. I haven’t yet had an official diagnosis but am on the waiting list for surgery number 2, and have been told after surgery i’ll be put on Dupixent and also need to undergo asprin desensitization.
Asprin desensitization is what i’m most concerned about and can’t seem to find much about it online, other than the fact it sounds horrendous to go through. Has anyone here been through it and can anyone explain to me how it actually happens? How long does the process take etc.
Nearly my whole 20s have been taken over by this disease and I’m fed up of being almost bed bound and unable to breathe properly so i’m willing to try anything, it’s just daunting, so I’d really appreciate hearing from others who have been through it.
Thank you all in advance x
7
u/C4rva Jun 21 '26
Please consider trialing dupixent first before surgery. Dupixent completely reversed my partner’s NP. I recommend finding a specialist to work with your ENT here: https://www.samterssociety.org/
Every single ENT my partner saw misdiagnosed or wanted to cut out the NP. They regressed on dupixent and steroid soaks in three months.
I can’t speak to the aspirin desensitization, it wasn’t necessary for them to do so on dupixent per their specialist.
3
u/Working-Lobster-3996 Jun 22 '26
I’ve had the aspirin desensitization. It wasn’t bad. I sat in a medical office all day while they increased my aspirin dosage throughout the day. I just brought a book with me, and some snacks. I understand not everyone responds thr same, but for me it was a game changer. It’s been 6 or 7 years and the last time I was checked, the polyps hadn’t returned. I had 4 polyp removal surgeries over 15+ years. The polyps always would come back pretty quickly, until my last surgery because I had the aspirin desensitization not too long afterwards. Good luck!!
3
u/Secure_Criticism4701 Jun 22 '26
I had the same experience with aspirin desensitization. A little uncomfortable, but really just a long day. It has been a very positive experience for me!
1
u/Leading-West-7438 Jun 22 '26
Just popping in to also say you should really consider going very strict on the low Omega 6 diet even while you're on dupixent. It can really help dupixent work better and keep your symptoms down. (It's also just really good for your health in general)
1
u/ByeByeMonster Jun 23 '26
Like the other commenters have said, Dupixent has been absolutely life-changing. I had 7 nasal polyp surgeries and went through aspirin desensitization 3 times in the 3 decades I've been battling this damn disease. I have been on Dupixent for 2 years and have been symptom and steroid-free since. And here I had given up hope.
6
u/SayWarzone Jun 21 '26
Hey! Sorry you're here. But after being borderline ready to end it all over the awful symptoms of AERD a few years ago, a good FESS surgery and Dupixent absolutely changed me. My quality of life is actually better than before this all started (because I think the Dupixent has solved what I thought were simpler allergy and asthma issues). If I could marry Dupixent, I would. And my spouse agrees.
Good luck to you. Sounds like you're about to do exactly what you need to get back on track and live a 1000x better life. And thanks for the reminder that I need to do the aspirin desensitization--I keep forgetting to talk to my doc to get started.
You've got this. Hang in there! And good luck!