1. < Ear, Nose & Throat (ENT)

Aspirin-exacerbated respiratory disease (AERD): Food or drink triggers

Posted by Erin O'Brien @mayosinus, Oct 24, 2016

For those of you who have Samter's triad (polyps, asthma, react to aspirin), have you found that things in your diet affect your symptoms? Do you react to certain foods or drinks?

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 31, 2020
In reply to @squirt0104 "Hi. I was diagnosed AERD April 27, 2020. I started having symptoms of severe skin reactions..." + (show)
@squirt0104

Hi. I was diagnosed AERD April 27, 2020.
I started having symptoms of severe skin reactions on my face in about 2018 that the dermatologist couldn’t determine cause or find a treatment.
Had had frequent rhinitis/sinus problems over the years and seemed easily susceptible to colds. Then in the fall of 2018 started with a cold, then respiratory flu, then bronchitis, and ridiculous amounts of coughing and never getting better from all the antibiotics and brief relief from prednisone while in it, but symptoms return after course. In May of 2019 they diagnose me with severe asthma at 56. ( never had before and doesn’t run in family) after months of treatment on daily inhalers and not much better went to Mayo and for another opinion and AERD was identified. I had put the ibuprofen connection together after noticing symptoms worse upon taking them. Took them for years for fibromyalgia. I also have an auto immune disease called Alopecia Areata. My question is do most people feel like crap all the time like I do? Even off aspirin. My symptoms are...
-skin rashes - constant headaches-chronic rhinitis/sinusitis-moderate asthma-total body aches and soreness- newly developed tinnitus- loss of smell and taste- weird taste in breath ( not metal)- fatigue - confusion and loss of words. Thank you for open forum of sharing info!

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Hi, @squirt0104 That sounds like a difficult disease to deal with. I found this site that explains it well and also talks about a Facebook support group. https://www.samterssociety.org/about-aerd I was interested in the aspirin desensitization and wondered if you had tried it. Are you able to cope with this on a daily basis?

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1 reply
squirt0104 | @squirt0104 | Mar 31, 2020
In reply to @becsbuddy "Hi, @squirt0104 That sounds like a difficult disease to deal with. I found this site that..." + (show)
@becsbuddy

Hi, @squirt0104 That sounds like a difficult disease to deal with. I found this site that explains it well and also talks about a Facebook support group. https://www.samterssociety.org/about-aerd I was interested in the aspirin desensitization and wondered if you had tried it. Are you able to cope with this on a daily basis?

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I did find that site and find it very helpful! I have not tried the desensitization yet as I was just diagnosed. They have started me on budesonide, the steroid rinse and have me doing Dulera and Montelukast. Unfortunately I feel like the new steroid rinse is causing other side affects, bad headaches, and chills so far after only 1 week. So much to learn! Do you have AERD? And if so found any treatment helpful?

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 1, 2020

@squirt0104 I hope things will go well for you. What is a “steroid rinse?” No, I don’t have AERD, I have a chronic brain inflammation called clippers. It’s been a long 2 years. I’m glad you went to Mayo. It sounds like they’ve started you on the right track!

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squirt0104 | @squirt0104 | Apr 2, 2020

It’s a steroid that you put in a saline rinse for sinus
I also have a possible ILD ( intertestinal Lung disease) which manifests in various forms of auto immune diseases. I have a lot of other odd symptoms that we aren’t connecting right now - all are inflammatory in nature. I’ve been having a lot of headaches too and they said I should have a brain scan but things were scaling back due to virus so they didn’t do at this time. I’m so sorry you have had a rough couple yrs with what you are dealing with and hope you are getting some relief of some sort. I appreciate you sharing your condition with me, I’m going to research it. We are thankful for the findings at Mayo and are hoping to pursue more info when the dust settles. I pray that you are getting some kind of relief!

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squirt0104 | @squirt0104 | Apr 2, 2020
In reply to @lisalucier "Hi, @squirt0104 - welcome to Mayo Clinic Connect. Sounds like it's been a long road to..." + (show)
@lisalucier

Hi, @squirt0104 - welcome to Mayo Clinic Connect. Sounds like it's been a long road to finally get a diagnosis of aspirin-exacerbated respiratory disease (AERD), or Samter’s Triad. Sounds like you were persistent and observant in getting to that point.

I'd like to point out some reputable information on AERD from the American Academy of Allergy, Asthma & Immunology https://www.aaaai.org/conditions-and-treatments/library/asthma-library/aspirin-exacerbated-respiratory-disease. I'd also like to invite @glj86 @emaria back to this discussion and ask if @lioness @becsbuddy @brightwings might join to provide you some support as you deal with these symptoms and to offer any input they may have. I'm not certain if @imallears @johnbishop are familiar with AERD, but they also may be able to provide some information and/or support.

Feeling like cr&p all the time, even off aspirin, would be very hard. Are there any medications, other treatment or self-care practices that have brought you even temporary relief from your symptoms (tinnitus, weird taste in your mouth, fatigue, confusion, loss of words, headaches, rashes, aches, soreness, rhinitis and sinusitis, etc.), squirt0104?

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Thank you for reply! I’ve tried everything from herbs to Accupuncture and chiropractic and kinesiology, new meds etc. I prefer natural but realize western meds are necessary sometimes. A lot of my experiences with them unfortunately are either ineffective or cause other miserable side effects.

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squirt0104 | @squirt0104 | Apr 2, 2020
In reply to @lioness "@squirt0104 Thanks Lisa but Im not familiar with this disease or syndrome I can only speak..." + (show)
@lioness

@squirt0104 Thanks Lisa but Im not familiar with this disease or syndrome I can only speak to tinnitus . Ive had it for year and the ENT said there is nothing you can do about it . Some things that have been suggested is a white light when sleeping I never tried this but I have tried the herb mullein and this works for me. As far as the allergies I have them bad right now . the rhinitis is bad I have post nasal drip that causes a lot of mucus I gargle with salt water and use a netti pot to clean out my sinuses every morning this really helps with the mucus. . Body aches yes with all my back problems and neuropathy This is about all I can address to . Have you seen your Dr? I had to get a prescription for the allergies that helped with the runny nose and mucus .

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Thank you for herb suggestion on tinnitus- just started with that about 4 months ago in addition to other problems. Will have to give a try - your relief with it is encouraging - thank you!

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1 reply
lioness | @lioness | Apr 2, 2020
In reply to @squirt0104 "Thank you for herb suggestion on tinnitus- just started with that about 4 months ago in..." + (show)
@squirt0104

Thank you for herb suggestion on tinnitus- just started with that about 4 months ago in addition to other problems. Will have to give a try - your relief with it is encouraging - thank you!

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@squirt0104 I found I did get relief so hope you do too Let me know take care

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hotfeet | @hotfeet | Nov 27, 2023

I realize this started in 2016 but was not aware of it. I have been treated for AERD at Mayo clinic since 2007 but actually diagnosed in 2017. My ENT was the best and after two sinus surgeries, she recommended Dupixent injections. This is about the only treatment that has provided relief from all of those symptoms mentioned by others. With regards to food sensitivities: Corn, Wheat, Soy are still a problem, however, I attribute that to the intense antibiotic treatments I received for sinus infections that began on or about 2006. Beware of constant use of broad spectrum antibiotics! It kills the good and bad gut flora leading to Leaky Gut and yeast overgrowth. I also find that wine and other fermented drinks, including beer are reactive and cause sinus pressure, coughing, and brain fog, regardless of the benefits of Dupixent.

Since I began the Dupixent injections in fall of 2020, most of the Aerd symptoms have diminished. I no longer use prednisone or ever have sinus infections, severe coughing. However, I do experience tinnitus again since april of 2023 that is persistent and varies in intensity. Additionally, I do experience sneezing and sinus irritation about 3 days before the time of each injection. I simply use the saline and budesonide rinse a few times and get relief until next injection.

I am curious as to why the last post was more than 3 years ago for this condition. Perhaps all have been on Dupixent and have experienced great relief!
I hope this sheds some light for those who still suffer.
Rick B.

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