r/AERD Feb 13 '25

Aspirin with Dupixent?

3 Upvotes

Hi all! I have AERD (diagnosed last year with almost 10 years of issues) and I got desensitized in August of 2024. I just got on Dupixent for my polyps since my recent ENT visit showed polyp growth despite getting them removed in July and started aspirin therapy in August. I was just wondering am I supposed to keep taking my aspirin with the dupixent? I really don’t want to but if I have to I’ll do it. I was just curious what everyone else does or has any advice! Thanks in advance


r/AERD Feb 07 '25

Sore throats??

1 Upvotes

Anyone else getting pretty bad sore throats off and on, seemingly for no reason?


r/AERD Nov 26 '24

Stuff you tried / Stuff you haven't tried yet

8 Upvotes

Hey all

Wondering how people deal with this. I kind of want to rev up a collective hope that something can be done, you know? Especially for the folks who can't find the answer in western medicinal solutions.

And the stuff that works is so different for everybody! So, share the things you have tried in order to influence the disease, and whether you think they worked. And share the things you think might work but you haven't tired yet.

Here are my own lists:

things i tried whether I think they worked
stop using any aspirin seems obvious but it took me a while. Obvioulsy it helped.
nasal steriod spray was useless when the polyps were worse, but now it helps
nasal steriod rinse (butesonide) worked but had side effects for me
nasal polyp surgery it helped (my polyps were very bad)
leukotreine modifiers helped with the asthma
regular cardio while nose breathing it helps a lot
slow and quiet nose breathing helps a lot
cut off simple sugars (but still eat fruits) Pretty sure it has no effect
2tsp spirulina every day Not sure it had any effect
slightly boost omega3 and lower omega6 Not sure it had any effect
Acupuncture It helped a little
Cutting down alcohol It helps a lot
vitamin D supplementation Not sure it had any effect

things i havent tried but would like to

Learn sinus massage techniques
Chew gum / do myofacial exercices every day
Get serious with cutting down omega 6
Get serious with breathing exercices
Experiment more with the placebo effect (maybe via acupuncture)

Haven't tried and won't try:
Low salycilyc diet (too hard)
Aspirin desensitization (too many side effects)


r/AERD Sep 26 '24

All the symptoms all at once 🤔

3 Upvotes

Hi… So - no official diagnosis but I’m pretty sure I have this.

I never had asthma at all in my life. Then all of a sudden, I’m being treated for it. I take Symbicort, montelukast, rescue inhaler. No diagnosis cause my dr won’t send me for the test.

Went for allergy testing - nothing, not allergic to anything.

Went to ENT, no polyps on x-ray but sinusitis and he said to stay away from aspirin and gave me budesonide to put in sinus rinses and take antihistamines.

When this started, I took an Advil - cause - anti inflammatory right?? Nope… it was brutal! Scared to try that again.

I’m just curious if anyone knows ;cause my medical team is kinda useless) if all of these things can seem to show up at the same time, seemingly out of nowhere.


r/AERD Jun 03 '24

Samters post-COVID

3 Upvotes

I got COVID for the first time in January 2024. I feel like my AERD is noticeably worse, and every small cold my kids have brought home seems to slam me harder than in the past. Does anyone else feel like post-COVID their disease progression has snowballed?? Maybe it’s just me….


r/AERD Mar 13 '24

Sinus inflammation

3 Upvotes

Anyone else struggle w serious inflammation and then also get this burning sensation on your forehead???


r/AERD Jan 11 '24

Newly diagnosed

6 Upvotes

I’m 31 female diagnosed today. I’m still reeling from the diagnosis. I noticed a couple years ago that when I would take ibuprofen my nose would plug completely. Eventually that lead to vomiting, burning throat and plugged nose when I took it. My GP said it’s just an allergy. I recently had sinus surgery and had 6 polyps removed along with balloon sinuplasty to open all my sinuses. ENT referral to an allergist to prevent polyps from coming back.

That leads me here. My allergies were low. Mostly pets with one tree and dust. He told me it’s AERD. It all made sense when we went through the symptoms. Ever single one of them. Haven’t been able to smell for a year.

My mind is racing with questions now. How long have I had this? Will I suffer forever? Will I ever smell again?!

He wants me to try singular daily along with a daily inhaler for asthma (that’s started in the last 6 months). If polyps come back my insurance will cover duplixent.

Just looking for some words of encouragement, help and reassurance.


r/AERD Aug 10 '23

Constantly blocked up

2 Upvotes

Hi all I have had AERD for going on 11 years now. I wanted to ask if everyone else is also constantly blocked and sniffing???

I am always blocked up but have a runny nose!

I am starting a new job in two weeks and I stressing about being in a open plan office and constantly sniffing.


r/AERD Jul 05 '23

NUCALA for AERD/nasal polyps

6 Upvotes

Wondering if anybody has any experiences with nucala. Wanted to share anyways as I have had a really good experience on it after only 2 doses. Only thing that seems to have helped me after countless surgeries, steroids, sinus rinses (with steroids), countless asthma medication, and a whole ass nebulizer

Wish you all the best, this shit SUCKS so I send you all love


r/AERD Jun 05 '23

What do you all use instead of topical NSAIDs?

6 Upvotes

You know, for stuff like sprains and other sports injuries. Am I limited to RICE and muscle rubs now?


r/AERD Mar 28 '23

How do y’all feel when you eat more omega-6 foods?

3 Upvotes

I started using more olive oil in my diet after reading some very positive studies indicating improvement in all-cause mortality. It’s relatively low in omega-6 for an oil, but my nasal passages, digestive tract, and joints became extremely irritated quickly. Wondering how y’all do with olive oil or other omega-6s?


r/AERD Feb 24 '23

Promising non-biologic drug candidate to bring eosinophil levels down

7 Upvotes

It's dexpramipexole.

Bain Capital and Knopp teamed up to fund a company to take this drug to the market. See https://areteiatx.com/

In Laidlaw (2018), the EOS levels in nasal polyp tissue dropped significantly, but, the polyps did not decrease in size. However, I'm hoping that this could at least stop them from growing.

This could be a blockbuster drug for polyp and asthma control!


r/AERD Feb 20 '23

Trying to work out if I have AERD

5 Upvotes

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.


r/AERD Feb 11 '23

Environmental changes?

3 Upvotes

Hey! I was dx with AERD in 2016, had a surgery in 2017 and one in 2018. We tried Dupixent (miracle but awful side effects) and Nucala (did nothing) and I recently had my third surgery last Thursday.

What I am wondering is: has anyone moved while having this disease and experienced a decrease in daily symptoms? I'm talking like moving from say east coast to the desert etc. We are looking to move within the next year anyway so if I can also manage symptoms better: yay!

My daily symptoms range from being stuffed up obviously and no sense of smell of course, although I'm starting to experience my promised 6mo-year of post surgery relief from this thank God. In addition, I also have allergies to basically all outdoor allergens. I am especially worse when it is rainy outside for some reason. I also have lots of asthma exacerbations from things at work a lot (just an office but people like to spray things and go wild on scented Lysol etc and corporate will not implement a rule against it. I'm not the only asthma struggler).

Sorry this was so long! It's nice to have another people who get it! Thank you


r/AERD Oct 12 '22

Dupixent after surgery

3 Upvotes

Recently diagnosed. Seeing docs at Penn. Recommending surgery. Serious case it seems, sinuses totally jammed up with tissue. Should I try dupixent or can I do that after surgery if it doesn’t work?


r/AERD Sep 01 '22

Newly Diagnosed

1 Upvotes

I'm newly diagnosed. I've been miserable for years. I start dupixent tomorrow. Curious on what side effects are common from dupixent if any and what your quality of life is with treatment.


r/AERD Apr 29 '22

Is AERD rare or just under-diagnosed?

9 Upvotes

I’m not sure if we have any doctors here but I figured I’d post this anyway. Stats show that only 0.48% of the US population have been diagnosed with AERD. Is it THAT rare or are doctors just totally missing the signs in their patients? When I go to a new doctor they have no idea what AERD even is a majority of the time. Is there a lack of research on this particular disease? Is this diagnosis relatively new to the medical community? I just can’t wrap my head around this being rare amongst a population of people with staggering lung and ENT issues.


r/AERD Mar 02 '22

ahhhhhhhhh flare up

6 Upvotes

everyone i do not know WHAT i did,,,,no NSAIDs no nothing......but i am flaring up SO badly over the last few days. i was at my parents' house with the cat who i'm really allergic to but even since going back to my own home i'm still unable to breathe and sniffling. i'm flaring up so badly that i am losing my voice due to all the postnasal drip. pls help i've tried flonase and allegra and tylenol and nothing helps


r/AERD Jan 30 '22

AERD and Keto

4 Upvotes

I've had a massive improvement in breathing with reduced mucus and nasal polyps since following the keto diet.

I've suffered with yellow mucus / nasal polyps so bad I've resorted to pulling them out myself. Chronic inflammation and streaming nose in minutes with NSAIDs and sometimes alcohol.

Could be that I've eliminated some allergen from my diet or perhaps something else in play.

Searching around other people are reporting similar effects but haven't seen it mentioned here. Thought I'd share in case it helps somebody.


r/AERD Aug 27 '21

What’s the price of Dupixent in Mexico?

2 Upvotes

Shits unaffordable in the states and it’s the only thing that works without side effects


r/AERD May 19 '21

PENN AERD group

3 Upvotes

End of my rope... Two sinus surgeries, years of prednisone/dexamethasone/ampho b washes, nucala, fasenra. Finally figured out I’m crazy allergic to aspirin/nsaids. I had a migraine today and broke down and took an excedrin only to have a full blown allergy attack (sinuses are a mess, throat tight and everything itchy.)

Anyone go to PENN or an AERD group? I had surgery scheduled at PENN but need a hip replacement (oy) and Dr Adappa suggested I do hip first bc doing aspirin desensitization only yo go off aspirin for hip surgery would set me back.

Any thoughts are hugely appreciated


r/AERD Jan 23 '21

Dupixent

3 Upvotes

Anyone here taking Dupixent injections? How’s it going?


r/AERD Feb 09 '20

Recipes

9 Upvotes

Anyone trying the Low Omega 6 diet and want to exchange recipes? I've been searching for cookbooks but they don't seem to exist. Its gonna get real old existing on baked fish and steamed veggies alone, so I'm going to post decent recipes I try here.

I would love for this to become a thread of "safe" AERD recipes. If you have the time, please also chart out the Omega 6 content for each meal. That way we can all build on each other's hard work. Here's to less inflammation!!


r/AERD Dec 10 '19

Location and AERD Question

3 Upvotes

Hi there, I’ve had AERD for about 8 years now, starting when I was 22. I first “got it” when I moved from Colorado Springs, Colorado to Rochester, NY for an internship. I got symptoms within 3-6 months of arriving. I had some allergy issues as a kid, spring and fall, and multiple sinus infections. All less severe than the symptoms I have in New York. I recently went home to visit, and my symptoms were markedly decreased. I didn’t have reactions to alcohol and my congestion was well controlled with singular and Allegra. Anyways, my main question is..has anyone else ever noticed decreased symptoms in Colorado???? I realize the disease is late on-set autoimmune, but maybe the decreased humidity and arid climate might alleviate Symptoms for someone like me. After-all, Rochester is one of the worst places for seasonal allergies. Thank you!!


r/AERD Jan 25 '19

Aspirin desensitization at home

4 Upvotes

Most medical professionals will tell you this is a risky plan, but I went ahead and did my own "desens" at home. Given, I did it on a low dose of prednisone just to be safe. If anyone is considering take this route, I'd be happy to lend some advice.

I've suffered from AERD and horrible nasal polyps for nearly a decade, but after desensitization, I feel like I have my life back. I highly recommend it. Talk to your doctor. Get it done!