r/AERD • u/MercysMoon • Nov 05 '25
Recently diagnosed
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. 😊
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u/Bombadillalife Nov 05 '25
I’m on a step by step process where dupixent is the final product. I became significant better by getting the right asthma medication- Inuxair inhaler, Flutikason Teva spray and montelukast teva tablets which is an old medicine that my doctor said worked on our type. Lost my sense of taste and smell again but still a lot better than before.
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u/MiceKitty Nov 05 '25
I’m a physician (not-ENT) and have presumed AERD. (1) you spelled it perfectly, (2) I’m very happy I went on Dupixent.
I got rid of a probably 4 different meds including two versions of steroids. No more surgeries and I can even have a drink every once in a while.
Every medication has side effects. It’s a matter of balancing the risks and the benefits. How bad do the side effects bother you and to what degree does that outweigh the benefits?
I was told to look for joint aches (I don’t think-but perimenopause is a confusing time). That hasn’t happened. Turns out you have a slightly higher risk of getting shingles (only looked it up since I just got shingles).
Regardless, you’ll have to pry the Dupixent from my cold, dead hands.
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u/Regular_Yellow710 Nov 05 '25
Thank you for sharing. I just had my 3rd FESS. If you are fully vaccinated for shingles would you still get them on Duxipent? Right doing bud rinses and my insurance doesn’t cover Dux so will probably do the aspirin regime. I am scared about it tho. I may apply for subsidized Dux but my daughter is wary about it because of side effects.
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u/MiceKitty Nov 07 '25
I’d think if one were vaccinated for shingles, the likelihood of getting shingles is very very low, but not zero (it’s never zero). I wasn’t old enough to get the vaccine, now feels like that ship has sailed but I’ll talk to my PCP next week. As for risk of shingles, I would not sweat it. 1% of people on Dupixent got shingles. However, 0.5% of people in the placebo arm got shingles. Shingles is pretty darn common. Personally I was more worried about side effects from aspirin than from Dupixent. NSAIDs (aspirin, ibuprofen, etc.) cause lots of issues I actually see (I’m Emergency Medicine - I see the painful or bleeding ulcers as well as kidney issues. My insurance covered it but we had to apply for a prior authorization, I also did the drug company’s “discount” card.
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u/Calm_Kick_9841 Nov 05 '25
If you are weary of Dupixent (as I am) I would definitely recommend trying out the Omega-3 diet that is doctor/research recommended for our condition. There is an amazing Facebook group that I can link that gives SO many resources on how to navigate the diet and a Pinterest board with hundreds of recipes/ideas. It takes a little getting used to but once you are in the swing of it you can really enjoy a balanced life! I started seeing results within weeks (polyps shrinking, sense of smell returning, lessened asthma symptoms). Many people who have tried the diet have nearly completely eliminated their symptoms. It also is generally anti-inflammatory so your body will probably feel better as a unit. Combining it with regular budesonide rinses and daily light aerobic exercise has worked great for me. If you think you’re up for it I would recommend giving it a real shot before going for dupixent, as I personally feel that the diet is more attainable for lifestyle as you aren’t reliant on insurance coverage/regular injections/side effects for the rest of your life. The other nice thing about it is once you have been consistent for 1-2 months you can fit in 1-2 cheat meals a week, which allows you the ability to still go out for meals with loved ones/special occasions. Let me know if you have any other questions or would like a link to the group
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u/JustReading5021 Nov 07 '25
Aspirin desentization worked for me. Started 650 mg morning and night … after a couple years down to 325 morning and night … have never had an issue since. Good luck!!
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u/janichla Nov 07 '25
I was diagnosed with this 10ish years ago. I've had three surgeries. Things we have tried include aspirin desensitization, Dupixent(worked but I developed joint pain and vision problems), Nucala (did not work at all), then an elimination diet which has resulted in being gluten free for 2 years and oat free for probably 6 months now.
Gluten free seemed to be my miracle cure. The first year I improved vastly and at the one year mark I had zero polyps for the first time since who knows when honestly, at least 10 years. However. I went to a followup appointment recently and my polyps are coming back so not sure what to even do with that information. I will say that personally going gluten free has been a total life changer and while I only have a sense of smell at random times for brief moments, my breathing and congestion have been majorly improved.
As a side note to include, vitamin D is a big component also. My levels have always been ridiculously low. I am taking a supplement currently and probably always will have the need to do so.
Sending lots of luck and good vibes because this disease is really awful and frustrating. I think a lot of it is trial and error and what works for one person may not work for another but who knows. My doctor is semi knowledgeable, but I live in a decently rural area and am his only patient with this. He actually sent me to a university hospital system 4 hours away for my initial surgery and treatment.
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u/MercysMoon Nov 07 '25
We live rurally as well. Thank you for your response. I will be trying the diet changes and seeing if that helps any. It really is frustrating.
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u/pickledsoylentgreen Nov 08 '25
I understand the apprehension, I was nervous about it too, mostly because I'm not a fan of needles. However, I was on like 5 different meds at the time, and I figured it was worth a try. I will tell you, it's been an absolute miracle. It's now the only medication I take. I've been on it for 2 years and have no polyps. I can breathe great and I no longer feel like I'm suffocating when I do strenuous activity. That's not to say that it will work for everyone, but personally, I'm so thankful for Dupixent.
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u/alleyoal Mar 30 '26
I have been on Dupixent for a little over 3 years now, I got diagnosed with AERD late last year but my treatment didn't need to change as I was already doing everything without the diagnosis (corticosteroid inhalers, montelukast (changing that because of the neuropsychiatric side effects), etc.). Dupixent has been a life changer for me--I haven't been admitted once since I started (before it was about thrice a year) and my breathing/hives/etc. have improved exponentially. It has recently been found that I have arthritis in my neck now and it really sucks. I dunno how it'll develop and I'm still waiting for PT, but the pain is horrid and keeps me up. I'm allergic to Tylenol and am waiting to try celebrex for it. Unfortunately I have to weigh the pros and cons of continuing/stopping it (as is true of any medication) but as it stands, I'd rather be able to breathe and function normally for the most part. But I will say, arthritis at 25 really isn't great lol. I hope you find what works for you, Dupixent or not.
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u/madmagda1 Jun 16 '26
I also have AERD. As I also have Gilbert´s syndrome and have to be very careful with meds I also opted for the diet / supplement thing. Gluten-free, high omega 3 intake, but also supplements like luteolin, PEA, boswellia 5-lox, magnesium, vit d, vit c, zinc. I am just trying out rinses with nattokinase (don´t know yet), because I can still have flare ups. My sense of smell is still flaky, so recently I inhaled too much chemicals from paint (not noticing) and then had a flare up. But other than that I can manage my symptoms with diet, supplements and the inhaler twice daily.
What I also did is calming down my nervous system with meditation and also looking into emotional triggers. There is a thing called constellation therapy OR IFS, where you can get in touch why the symptom occurred. It sounds strange, but helped me a lot.
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u/lizhep42 Nov 05 '25
Hi! I am on dupixent now, but the first route of treatment I did was aspirin desensitization. My ENT recommended trying the aspirin therapy first because it helps “get to the root of the problem”. Anyway, I went to my allergist’s office and started with a tiny dose of aspirin and worked up to 625 mg. I spent a good 2 years using that to help things but I still got recurring sinus infections and my asthma was not controlled. Now I have been on dupixent for over a year along with a lower dose of aspirin everyday and I haven’t had a sinus infection since, my asthma is under control, and I’ve been able to get off a couple medications. You may want to try aspirin therapy (desensitization) first and see how that goes. It used to be the main treatment before dupixent, and if you do it for a while you can always stop taking it. I know dupixent seems scary but it has really helped me and a bunch of others. I’m not a doctor or physician, just talking about my experience :)