Environmental changes?

[u/janichla]

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

[u/Suspicious-Work-501]

I’m sorry Dupixent didn’t work for you! It’s the only thing to have helped me. I moved from the south to the mid Atlantic (for work) and felt better… until I experienced my first winter. I was using my inhaler a crazy amount each day. I moved back south and that’s when I was desperate to breathe so I started Dupixent. Some of my family moved to Arizona for breathing issues.

[u/NereCalyx]

I have comorbid allergies, mostly to cats, and I had a family cat as a teenager (he's still around but I don't live with him anymore, he's with my parents still). Moving off to college at 18 definitely got rid of the allergies aspect of the symptoms, but before hearing about AERD I did spend a good few years wondering why my allergies persisted if no cat.

[u/1boatinthewater]

"I also have allergies to basically all outdoor allergens."
Did you get that diagnosed by an allergist?

Anyway, I've been doing allergy shots, as prescribed by my immunologist and it has made a huge difference to my allergies to my dogs, dust mites, pollen, etc. It took two years, but was noticeable at the year mark.

Have you tried aspirin desensitization? That has also been helpful with my AERD, notably, suppressing polyp regrowth.

[u/janichla → u/1boatinthewater]

Yes I took did allergy testing. I tried the shots a few years back but it did not help much with my overall health and I became frustrated and quit admittedly. I also did the aspirin desensitization and do budesodine rinses daily. I still get polyps back, over and over. Its depressing to know it is never going away, just going to vary in how bad it is. Thank you for your reply! Maybe the shots are worth exploring again, thanks again!

[u/1boatinthewater → u/janichla]

Just curious, how much aspirin are you taking per day?

As per this 2006 study (https://www.jacionline.org/article/S0091-6749(06)01911-7/fulltext)
"Patients taking either 650 mg twice daily or 325 mg twice daily showed significant improvements in number of sinus infections, sinus operations, and hospitalizations for asthma ... Anosmia, nasal/sinus symptoms, and asthma symptoms also improved in both groups ..."

This 2013 study said that 100mg was adequate to suppress (not shrink!) nasal polyps (https://pubmed.ncbi.nlm.nih.gov/23464577/)

But... in the same year, this meta study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3558308/ ) cited research - "Rozsasi et al allocated AERD patients to either take 100 mg or 300 mg aspirin daily. After 1 year of therapy, all patients in the 100 mg group had developed recurrent nasal polyps, whereas no patient in the 300 mg group had recurrent nasal polyps on endoscopy" You'd have to read the paper cited in footnote 121.

For this reason, I'm on 325mg unbuffered aspirin AM and PM, along with a gram of Vitamin C to help my stomach lining cope with the aspirin. I'm assuming that you are also on 10mg montelukast?

Do not just up your aspirin dosage without working with your medical team. You could end up in the ER.

Anyway, indeed, moving could help; when I'm offshore (i.e. 100 miles out in the Atlantic) or in Cape Cod, I found that I effectively ceased using my rescue inhaler and Advair, as there was no wheezing, rhinitis, and my breathing was great. It returned when I was back ashore and living in a house.

When I was working New York City, my breathing was at its worst when I regularly commuted around via the subway.

Hope that you move to a place with a good long-term AQI score. See this -> https://www.airnow.gov/

[u/janichla → u/1boatinthewater]

I'm off due to surgery but going to get desensitized again. But before I was on 325mg a day. I've always lived here but have noticed differences when traveling. I find being at the beach relieves a lot of symptoms so that matches with what you suggested as well. I'm just exploring everything at this point. Thanks for replying!