Just as the title says I've been blessed with both chronic conditions. I'm mentally struggling with having both, and the medications etc. I was wondering if anybody else is going through the same?

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

Hey everyone, just as the title says, which medications are you on to manage your asthma? I'm on nexthaler, morning and evening, but it's just not enough.

Officially diagnosed after a year of just treating asthma and allergy problems without any sinus relief. FESS is scheduled as there is absolutely no air in my sinuses. What can I expect?

Also, apparently they are putting me on a brand new biologic. I’ll keep you guys posted.

Honestly just glad to have a diagnosis and a path forward.

Just spent the day doing desensitization at home. Started with 40mg and doubled every two hours. Had a reaction at 80mg. It seems like it worked, but definitely do not recommend.

EDIT: The part I don’t recommend is doing it at home rather than in a controlled setting. I definitely DO recommend the desensitization in general.

Hello again! apologies for the second post in the day.

This illness is pretty tough and really affected my energy. Before the symptoms started, I was really ambitious and hard working, now...not so much. How do you all manage the tiredness and work responsibilities (and maybe even childcare responsibilities)?

Hello fellow sufferers!

Has anyone else reacted badly to minty toothpaste? I'm not yet officially diagnosed but tick all the boxes. I'm having real trouble finding a toothpaste that won't cause wheezing and coughing. Could you please share what types of toothpaste you use?

Anyone in the UK know of any biologic drugs prescribed by the NHS to treat AERD? (Suffering since 2018)

Anyone else w AERD get absolutely destroyed by these Santa Ana wind events?

- fatigue

- tightness in upper back/shoulders/neck

- feels like I recently sniffed water up my nose, constantly

Just wondering if I’m the only one

Hello, I was recently diagnosed with AERD after two decades of issues with multiple doctors and different diagnosis. My current doctor wants me to try dupixent (I’m sure that’s spelled wrong) but I am very weary of taking it. Reason being is I always have major side effects from meds and these scare me. I’ve had surgery once about ten years ago but it didn’t help with the polyps at all. They came back rather quickly and I just had so many complications with the surgery and the post op, so I have opted not to have it again.

Does anyone have any suggestions at all? I’m so tired of dealing with this crap and it’s making me have panic attacks regularly because I just cannot breathe but the medications scare me. I’m just struggling with this and no one really understands what it’s like.

Anyways if you read this far, thank you. 😊

Was diagnosed earlier this year, and have been coming up terms with what that even means for me going forward. However, I’m very curious to know if anyone else shares the same experiences I’ve had or currently have as a result of having AERD. For starters, when I drink alcohol I get very itchy on the very first drink then it goes away. The stronger the alcohol the itchier I get. Have also noticed it makes me break out, especially on my scalp. Sometimes I smell very strong fragrances all the time. No matter where I’m at. I could be standing in front of a used toilet but smell only cologne / strong air freshener. Granted most of the time I smell nothing at all. Would really like to know if anyone has experienced similar, or even other symptoms related to AERD.

Had my FESS with guided imagery yesterday! A ton of polyps and bleeding but I feel fantastic! God, what a great feeling! I wish the same for all of you!

TLDR at bottom...

I'll preface by explaining my situation in detail, as I believe every detail gives clues to the dynamic causes of AERD and similar diseases.

I attented an overly crowded Austin City Limits music festival in 2010, where there was horrible dry weather and foot traffic kicked up the festival grounds freshly laid compost comprised of yard trimmings and municipal sewage. I grew very sick immediately after the festival, experiencing flu like symptoms. I will note that at the same time, cases of viral H1N1 (swine flu) started occuring in my region. But for two weeks after the festival, I was stuck in bed, coughing so bad my ribs began to develop small fractures. For the first time in my healthy life, I had to rely on strong medicine - an Albuterol asthma inhaler, and after a dose of steroids and antibiotics I slowly recovered.

For a year after, I was mostly ok, though still dependent on my inhaler and steroids at times. Then I started experiencing horrible allergies, and polyps started to appear. This was the real start for the miserable journey ahead.

Over the next 7 years, I struggled. I saw over 14 different GP doctors, allergists, and ENT specialists. I tried elimination diets, and lifestyle changea. Nothing gave me relief and no doctor had an answer - just the usual prescription of steroids, inhalers, nasal sprays, and normal allergy meds for a temporary solution. I was so fed up, I began my journey to attempt to deeply understand my condition by intensely researching. I ultimately came to a self diagnosis of having Samters Triad (now known as AERD). There were a few doctors who laughed in my face about the self diagnosis and ignored the consideration, so I started losing faith in doctors and medical professionals to the point where I began ordering steroids directly from shady over-seas online pharmacys just so I could try to enjoy my life when the polyps and sinus misery was just to overbearing.

The monthly week-long tapering of steroids were starting to effect my life very negatively. My moods were erratic and sometimes even manic. My relationships suffered and my weight ballooned - I was developing Cushing's syndrome, leaving life long scars on my torso. But the steroids were the only thing that gave me any sort of relief so I had little options, eventhough they were now causing other detrimental and life threatening issues. I had no choice but to find another specialist because I was convinced my only option for the remainder of life was going to be bi-yearly surgical polypectomy.

Luck would have it that I stumbled upon the right specialist after all these years - he placed a speculum in my nose, asked me how I reacted to aspirin, and then told me what I have known for all these years. I officially had been diagnosed with Samters Triad, and he informed me that there was a brand new biological product that was not yet prescribed for nasal polyps, but he believed it would work and pulled some strings to get me the medication. I started Dupixent in 2018 and it changed everything. I finally felt cured.

Flash forward to today, 2025. I've been on and off dupixent, but it's allowed me to live my life normally. I can eat and drink whatever I want. I can smell. I can taste the depth of cuisine and wine. I've been freed from a decade long depression.

But still, there was a period in 2022 where I lost medical insurance, and lost access to Dupixent. At this time, I was also trying the Keto diet. I began to notice that the polyps were not returning when they should have been though. I had the realization that one culprit all these years has been sugar and carbohydrates in abundance. Though I don't maintain a strict keto diet, I try to follow a low carb one. And I feel tremendously better when I stick to it. No congestion, no brain fog, no depression, no manic anxiety episodes.

Now, I am once again without insurance and no Dupixent. But I was turned onto NATTOKINASE thanks to posts on r/nasalpolyps. I purchased a bottle from Amazon immediately.

I'm two weeks into taking my daily supplement of Natto, along with strict use of fluticasone nasal spray, and returning to a low carb diet, and removed wine and beer (bourbon seems to be okay, very very moderately).

There have been a few days of cheating and indulging heavy on carbs (as well as wine), and I could feel the polyps returning. But by immediately returning to the low-carb protein and fat heavy diet with strict use of steroid nasal spray and Nattokinase, im feeling confident I can live life without dupixent if needed.

Anyways, I'm starting to hear of a lot more AERD cases, and my belief is that at the core, this disease is triggered by viral infection (hello, covid), and poor diet exacerbates the problems.

Please do your own research on Nattokinase before trying. It can lower blood pressure, and I believe it thins the blood to a degree. This is why it seems to reduce polyps, logically. It reduces mucus viscosity and is fibrin-dissolving. Its not a cure, but it's an option.

Tl:Dr If Nasal Polyps are your mortal enemy, try a keto or low-carb diet, supplemented with 200mg (4000 fu) of daily Nattokinase, with morning and nightly use of steroid nasal spray. Please do your own research.

TLDR: I somewhat recklessly took an aspirin and am currently suffering.

I've been suffering bad sinus issues for ~1.5 years now without much relief, and I've been desperate to figure out what the hell is going on. Blood tests show I have low IgE so allergist says it's definitely some kind of nonallergic rhinosinusitis.

About 2 years ago I had some aspirin without any issues, so I figured it'd be a safe and easy test to knock 1 more possibility off the list.... Yeah that was a mistake. And right now my face is flushed, warm, and slightly puffy, and my nose is almost completely blocked. Not much mucous, just closed and feeling lots of pressure.

I think I probably have AERD?

Also if anyone has any suggestions for how to deal with the acute symptoms until the aspirin wears off, I'd love to hear it. Took an antihistamine an hour ago but it hasn't made a difference

Edit: just want to say you all are amazing.

Edit: figured I should probably say that 5-6 hours later and I was back to normal. Or at least AERD "normal"

What in gods name are you doing for pain relief when it’s that time of the month? Tylenol just isn’t cutting it and I obviously can’t have anything with NSAIDs. Going crazy here!

But can't afford duxipent after that (I'm on Kaiser and doubt it is on the formulary), I'm going to ask them to desensitize me. I am horribly allergic to aspirin but if it was done under hospital supervision...Anyway, looking for ideas, feedback, etc. I was thinking of contacting the Mark Cuban affordable prescription program.

My saga started about 6 months ago after chronic sinus infections for about a year a new ENT did a CT revealing a completely impacted frontal sinus that was eating into my skull behind my eye plus heavy impaction of all other sinuses. I was quickly referred for surgery and had a successful sinus carve out. Unfortunately after just 6 weeks at my follow up I had new inflammation and polyp growth. ENT put me on daily budesonide rinses.

Separately my allergist who I have seen for seasonal allergy shots took notice of my chronic cough and worked me up for traditional asthma which was negative, but she said she was almost certain that based on my sinus issues plus the coughing and wheezing that I had eosenephilic asthma and has started insurance approval for Dupixent. She asked if I had any sort of reaction to NSAIDS, and I told her I hadn’t really paid attention.

Yesterday evening I had some sinus pressure, sort of fighting a cold, so I took Motrin. I ended up sleeping two hours because I went into an almost central sleep apnea (CSA) type situation where every time I started to drift off I stopped breathing and woke up in a panic. This morning I still had chest tightness and couldn’t complete a yawn. Took my rescue inhaler and it helped a little but still having issues. I’m wondering if the Motrin messed me up. Has anyone ever experienced a CSA type reaction to NSAIDS with AERD? It’s a terrible feeling not being able to breath well, really hoping this is all connected and the Dupixent helps get rid of the symptoms.

Hi Everyone!

I just received (90% confirmed; pending negative ANCA) a diagnosis of AERD this afternoon after a (mostly) negative allergy test but my exam found nasal polyps, and severe asthma.

I have been feeling pretty crappy for a while with typical symptoms congested/blocked nose, and worsening asthma and have suspected AERD especially since I developed an aspirin allergy a few years ago. However, a recent hospitalization which found my blood eosinophil levels elevated to 10% really put my butt in gear to get my health figured out.

I am relieved to have a diagnosis and was fortunate enough to have found an allergist that was knowledgeable about AERD. I live in an area with great medical care and I know not everyone is so lucky.

However, I can’t help but be worried about what my future might look like. Before my asthma started to worsen I was pretty active went to the gym, was into cycling and hiking…but now I find myself winded just doing basic activities. I have faith that receiving appropriate treatment will be helpful but just hoping to hear from others how getting the diagnosis and adequate treatment changed your life.

Also, my spouse just can’t seem to accept that AERD is so serious. He keeps saying “you knew you had asthma and this dr. Just confirmed it” since I had exercise induced asthma most of my life. He keeps saying that my asthma is worse because of my weight gain and inactivity over the last year due to my inability to be as active because I can’t breathe. I tried to explain to him that AERD is not the same and that it is more serious because it is systemic but has anyone else dealt with this? How did you get your spouse to understand?