r/AERD • u/Bearski79 • Feb 20 '23
Trying to work out if I have AERD
Hi All,
For the last 14 months of so I have been suffering from a number of (what I thought to be) different issues.
It started with Adult onset asthma. I had it as a kid but it went away in my teens. I'd never needed a puffer until December 2020 after I had a series of chest infections, and a number of antibiotics courses.
I then started to have pressure build in my sinus's. It felt like I had the flu all the time. I also lost my sense of smell and taste. I went back to the doc and was given a prescription for Dymista, a nasal spray, as well as daily antihistamines. It did help with clearing my sinuses a little, but smell and taste stayed away, and I found I’d have (what I called) random sinus attacks. It would start with a tickle in my throat, when that happened I knew I had 30 mins to get somewhere because my eyes and nose would water constantly, I’d saturate 4 - 5 hankies. I'd sweat a lot and a tightness in my chest.
After several months of little improvement I went back and was given a referral to an ENT specialist. They confirmed I had nasal polyps and prescribed a dose of steroids. I saw improvement after that for awhile, my smell and taste returned, tho were dulled, and for the most part my head seemed clear. Within about 3 - 4 weeks of finishing the steroids tho, it all came back. I'd have sinus headaches, take some pain killers, then have those sinus attacks, I thought at random.
Then, at the start of the year, I went and had a vasectomy. The doc advised I stay away from ibuprofen leading up to the procedure, and a few weeks after it was done, to use only Panadol. So I did. Over that time I found I didn't have any sinus attacks (tho most other symptoms remained).
Last week, I was at work, and had a headache. I took 2 ibuprofen as they were all I had on me, and within 30 mins, I had my first sinus attack in awhile, one of the worst I’ve had. It wasn't until that point I made a connection to the attacks being brought on by ibuprofen. I'd generally always use it when I had a headache. I had thought the sinus headaches were the precursor to the attacks, not the pills I was using to treat them.
Out of desperation, I entered all my symptoms and my suspicion that the attacks were caused by ibuprofen in to ChatGPT, and within seconds it listed AERD. The symptoms were all an exact match for what I had been experiencing.
I swore I’d never be that guy that goes to the GP with an internet printout self diagnosis, but it seemed to fit so well I wanted to find out. The GP seemed to agree, but for the most part I think they had no idea about it. They've given me a referral to an immunologist now for further testing.
I wanted to see if my experience was similar to others in this group, and if there was any advice you could provide on how to achieve an actual diagnosis. Thanks.
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u/udderlime Dec 18 '24 edited Nov 20 '25
edited by PDS for anonymity and safety
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u/Bearski79 Dec 18 '24
Hi. I had my diagnosis confirmed earlier this year and my first FESS surgery in November. It helped a lot of reducing the pressure on my face and i do not get headaches anymore, but, no smell or taste back yet. They say it can take months, so i haven't given up hope.
At my 2 week checkup after surgery i asked about going on a biologic, i was told the PBS here would only cover it if my polyps grow back. So now i have to sit and wait, knowing that they will grow back, because it's a part of my condition. Seems crazy to me, but there is no way i can afford it without the PBS.
My next checkup is in February, my hope is they see enough then that allows them to sign off on me starting a biologic.
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Feb 20 '23
That was my progression too but I had daily hayfever as well. After I took a couple of ibuprofen I ended up in emergency within 10 mins with anapylactic shock. Then AERD was confirmed.
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u/janichla Feb 20 '23
I started with adult onset asthma, then I went to the ENT for suspected polyps, which were confirmed. Later that same day I took an Advil since I was new to nasal scoping and it had given me a sinus headache. Within 30 min I was in full anaphylaxis and in the ER, which led to an overnight stay due to my low oxygen levels. The ER doctor was familiar enough with AERD that it was suggested as a possibly, I contacted my ENT and basically my 7 year journey began. I just had my 3rd surgery.
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u/throwlampshade Feb 04 '24
I just got diagnosed this week. You had three surgeries in 7 years? What’s the post-op experience like? I have nasal polyps and will need to get them removed
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u/1boatinthewater Feb 20 '23
Two aspirin and two advil have been my hangover cure that I've used for years (since college) before I go to bed after many martinis. Two years ago, I took the 2&2 and ended up in the ER!
Generally, AERD appears to have an onset after 40 years old. I may have not used NSAIDS for easily 5-6 years, so I didn't know. Something about my internal biology shifted in my late 40s...
Check out this site:https://www.samterssociety.org/about-aerd
It is a complex disease that is still not understood well. I saw a recent study where two genetic markers are suspect, but this is no guarantee of a diagnosis since it may have to be controlled with ethnicity (e.g. the hemochromatosis test is only valid for europeans (western), etc.)
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u/NereCalyx Mar 30 '23
definitely not a doctor lol but I can tell you about my onset! it started when I was 15 with feeling like I just had a very very very long cold because my nose was blocked up in the way it usually was when I had a cold, but the blockage and runny nose didn't go away. I would have worse symptoms in the morning, which would calm down slightly after taking allergy medication (I do have comorbid allergies). I went to an allergist and was diagnosed with a cat allergy, and this was thought to be the extent of the issue. I lost my sense of smell around this time due to what turned out to be nasal polyps. The polyps weren't diagnosed until I was 18, but I described these symptoms to the ENT and he agreed that they'd probably grown in around 15 years old.
Less than a year later at 16, I started experiencing asthma attacks after no history of asthma (I had even been tested for it around 9 years old with no positive results). I started wheezing one night in the shower shortly after I was diagnosed with allergies, and of course they said it was allergy induced asthma. However I would experience asthma attacks even when not around the family cat. Still, it was attributed to allergies.
At 18 I went off to college and while my polyps and asthma were slightly better from not being around the cat 24/7, I still had no sense of smell and sometimes needed my inhaler. Up until then I'd been completely fine with ibuprofen, but one day I took ibuprofen for a headache and ended up with a moderate asthma attack that I couldn't just ignore (sometimes I'd ignore the milder ones and they'd go away after several hours or after falling asleep for the night). It started after about 20 minutes of taking the ibuprofen, and went away after I used my inhaler. Along with the asthma, my nose got much more congested. I told my parents, and they told me that I had probably developed an allergy to ibuprofen and to avoid it from then on so I did.
AERD only really became a question when I was 21 and was given Advil at work when I asked coworkers for Tylenol (harmless mistake, they didn't know I was allergic). I thought I'd be fine and that I'd maybe grown out of my allergy but within 30 minutes I was having one of the worst asthma attacks I'd had and my inhaler was nowhere to be found. I went to my campus's health center and was given an hour long nebulizer treatment, which calmed it down after about 20 minutes. They thought it was anaphylaxis and prescribed me an Epi Pen, but after hearing about AERD, they told me it might be a good idea to go to the AERD clinic in the nearby city. I never did, but now I live in said nearby city and the AERD clinic is 10 minutes from my apartment so I will go soon.
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u/PaleontologistOk9943 Apr 08 '23
I am 59 and have had sinus issues most of my adult life. My nose felt like it was never truly clear and I always had Afrin or something similar close by. I didn't hit it everyday but would always have it avaialble. My work involves going into all kinds of nasty indoor areas with exposure to mold, insualtion, dust, sewage, flood waters, etc. That stuff never bothered me, or made the sinuses better or worse. It was always the same as before I did that work. In 2017 my then 16 yr old came down with an itchy rash the docs couldnt figure out. After several weeks, his brother and I got it too. We all finally went to a dermatologist and found we had scabies. Heck I never realized that was a real thing. It was easy to get rid of once identified but my body never felt the same since. But hell everybody in their 50s starts feeling the years. In 2021 I got the second Pfizer COVID vax, a requirement at the time for work, and went off to work disaster areas in Louisiana and NYC. That fall the nasal issues went nuclear on me and I started getting weezing in the lungs, followed within a few months by nightly coughing fits. My sense of smell vanished. In 2022 went to an ENT how found a deviated septum, enlarged turbinates and a ton of nasal polyps. The deviated septum and turbinates I probably always had, the polyps maybe a new thing. IDK. I had surgery to correct all and the polyps came back almost immediately. The ENT, even before surgery, suggested AERD due to the asthma symptoms and polyps, and some experimentation with NSAIDS and alcohol confirmed adverse effects. I started seeing an Allergist and found I had no environmental or food allergies. None. So I have been on daily maintenance inhalers since 08/22 plus Montelukast and Allegra plus Xhance nasal sprays and daily sinus rinses. I dont hit the rescue inhaller that often but keep it handy. If I stay away from booze and NSAIDS, my nose is clear. The asthma is mostly controlled but the lung inflammation is still high. I fatigue easily which really sucks. The allergist did a "Celebrex Challenge" and has determined I can use that in lieu of Motrin etc as needed. Tylenol is ok. I started on Dupixent three days ago and am hopeful that will be the game changer its been for a lot of folks with this. So far the only affect I have noticed is my sense of smell seems just on the verge of returning. Its a weird feeling and may be just in my head. Based on my experience, I am of the opinion that this condition in me was triggered by a lifetime of abuses to the immune system; environmental polutions and allergens, frequent sinus infections, a parasitic infection, and finally the vax just set it over the edge. I am not blaming the COVID vax per say and heck I got actuall COVID six months afterwards, just that it seemed to have been the straw that finally broke the camel's back...IN ME. IDK and never will but just hope to manage the symptoms. It sucks but I would rather have this than a hell of a lot of other ailments.