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My Aspirin Desensitization At The Mayo Clinic

If you are considering going through the process of becoming desensitized to aspirin but are a little uncertain or even nervous about it, let me tell you about my experience with it at the Mayo Clinic in Rochester, Minnesota. I am obviously not a health professional, and this is only my story. I know some others are thinking about it and wondering what exactly to expect. This is sort of long and meandering, so you can skip about halfway down to get to what happened during the actual procedure.


First of all, why did I do it? I have AERD, or Aspirin-Exacerbated Respiratory Disease. This is also called Samter’s Triad and Aspirin Triad. It means I have nasal polyps, asthma, and I am allergic or sensitive to aspirin. Sinus infections are a regular event for me. I have had multiple sinus surgeries to remove the polyps, but they come right back within a few months. I have no sense of smell due to severe inflammation and polyps blocking the air’s path to the olfactory nerve. It’s been decades since I took any aspirin or Advil, but the last time I accidentally ingested aspirin (Alka-Seltzer Plus. I didn’t read the label carefully) I ended up in the ER. My chest was so tight and my throat so swollen that I couldn’t get air in or out. Mega scary, and I’ve been very careful since then to only take Tylenol for pain.


I had my last sinus surgery on April 16, 2015. I developed a sinus infection in mid-May. I was put on antibiotics for 3 weeks. In late June the polyps were beginning to return. By the end of July they were back in force. The ENT put me on a very high steroid regimen and recommended Aspirin Desensitization. She explained that I would be carefully fed small amounts of aspirin in increasing doses until I had a reaction. By the end of it I would not be allergic anymore and would take aspirin every day for the rest of my life. The very thought of the process scared me senseless. All I could remember was the horrible sensation of not being able to breathe twenty years ago. She also explained that salicylates, the main item in the aspirin that made me so sick, were also in many other foods and products. Even though I didn’t react to them the way I did to aspirin, their effect may be cumulative and could be adding to the inflammation in my nose and sinuses. If I could be made to tolerate aspirin, I had a good shot at taming the inflammation and keeping the polyps small. After thinking about it, I decided it was worth the risk.


The nearest place to my home in Fargo, North Dakota, USA that would perform the Aspirin Desensitization was the Mayo Clinic in Rochester, Minnesota, USA. It’s about a six hour drive for me. Several friends who live in Rochester offered to put me up so I wouldn’t have to spend money on a lonely hotel room. James and Becky Littlefield, Garret and Gayle Bitker, and Jason and Liz Coltom all offered me a guestroom. I am so lucky to have such wonderful friends! These are all people I know from the SCA, my historical recreation group. I decided to stay with Jason and Liz because I looooove all their beautiful kitties!


In mid-September I went down to Rochester believing I would have the procedure then. My first appointment was the afternoon of Tuesday, September 15 with Dr. John Hagan. I thought Tuesday would be the general assessment and maybe some tests, and then Wednesday and Thursday would be the actual procedure, but it turned out that my polyps were too large. Dr. Hagan wanted them smaller, before the “aspirin challenge”. I guess the larger the polyps the larger the risk. But that is my guess, not a stated fact. So on Wednesday and Thursday I had some tests (breathing tests and blood work) and he wrote prescriptions for prednisone, flovent, singulair and budesonide rinse. Luckily, I’ve met my insurance cap for the year, because the budesonide rinse is nearly $500.00 for a month’s supply! A new date, September 29-30, 2015 was set for the actual desensitization.


The instruction sheet they sent me told me to not eat or drink anything after 11:00pm, and to check in at 7:45. I was to bring food and water, and any games or books I wanted to keep myself occupied with for the 8 to 9 hours I would be there. I arrived at the Desk 15L in the Mayo Building at the Mayo Clinic promptly at 7:30am, with my kindle, knitting, and lunchbox attached to my shoulder. I was a little nervous, to be honest, and being made to wait until nearly 8:30 made me even more nervous. Two nurses led me to a small room and took my vitals, and administered a quick breathing test to establish a baseline. They would do the same thing throughout the day, each time they gave me aspirin. An IV port was put into my arm, just to be on the safe side, so any meds could be instantly administered in the case of a rare severe reaction. All the nurses and techs were deft and professional. I barely felt the IV going in.


The first aspirin came not in a pill, but a nasal spray. I’d never heard of that, but I had one sniff in my right nostril around 8:30. No reaction. Then at 9:00 I had one sniff in each nostril. The nurse, Kelly, said they expected any reaction to be light, and usually it occurred before noon. Probably sneezing and congestion. Rarely, she explained, did anyone have a severe reaction, although the longer I went without a reaction, the more severe it was likely to be. 30 minutes went by with no reaction. She then gave me two sprays per nostril at 9:30. Still no reaction. No reason to worry yet, she assured me cheerily.


Then at 10:30 she gave me three sprays per nostril. About ten minutes later I began sneezing, my nose clogged, and my eyes got scratchy. Yay! A reaction! Hardly anything, really, more like getting a cold. They called Dr. Hagan to come look at me. Everything was going according to plan. The symptoms died down in less than a half-hour. At 11:30 I was finally given aspirin in pill form. 60 mg (which is less than a baby aspirin) in a gelcap-like white capsule. Oh, boy, a little wheezing. Nothing bad. If I were home I would have used my albuterol, but it wasn’t scary. More congestion and sneezing. The doctor came again and listened to my lungs, ordered a hit of albuterol for me, said he was satisfied, and went away again. I asked to go to the bathroom (they escort you down the hall and back, I suppose so you aren’t alone if you suddenly have a bad reaction) and I noticed spots on my face in the mirror. I pointed them out to my nurse escort, and she walked me back to my little room and called the doc again. He came and looked at my face and agreed that yes, I was having hives. Hives apparently is an unusual reaction, but nothing to worry about. I was given Allegra and albuterol and told to sit quietly. There was a break in the action once the reaction was gone, and I was allowed to eat my lunch. At last! I was pretty hungry after not eating for 14 hours.


At 1:00 we repeated the 60mg capsule of aspirin. No reaction. At 2:45 or so they wrapped the IV port in gauze to keep it from getting snagged, and I was released from Mayo. Day One of the Aspirin Desensitization was complete, and had gone as expected. I drove back to my friends’ house. Jason, Liz and I went out to supper that night and had a great time walking around the mall in Rochester. I felt fine.


The next day I returned to the little room at Mayo and the nurse, this time Michelle, took my vitals and gave me the usual air flow test. At 8:30 she gave me a capsule of 150mg of aspirin. That is about half the amount in one adult aspirin. We waited three hours. No reaction at all. At 11:00 I was allowed to eat the lunch I brought. At 12:30, she gave me a 325mg aspirin. That is the amount of a regular adult aspirin. I still had no reaction. Dr. Hagan came in to talk with me. The aspirin challenge went exactly as it should have, with me having a mild reaction to aspirin at around 60mg, and then no more reactions even at a higher dose. He has put me on 650mg of aspirin twice a day for life. That is two regular adult aspirin in the morning, and two at night. I am on the Singulair for another month. He wants me to continue with the budesonide rinses twice a day. I plan to do that for as long as I can afford them. We’ll see what happens when January comes around and I’m starting all over with my insurance. 🙂 And in January I need to travel back to the Mayo for a follow up. Possibly he’ll reduce me to 325mg of aspirin a day at that point. If I miss taking the aspirin for 2 consecutive days I’ll need to completely stop taking aspirin and come back for another desensitization procedure.


That was only yesterday and this afternoon I was able to smell the laundry detergent in the grocery store. The scent wasn’t sharp or clear, but it was definitely there. I was seriously nervous about going through the Aspirin Desensitization, but it turned out to be very easy. If you are like me and have suffered for years with nasal polyps, sinus infections, asthma, and aspirin sensitivity, maybe this aspirin desensitization could help you. It’s only been a day, so I can’t speak for the long term, but right now I’m feeling hopeful. And I haven’t felt that way about my sinuses in decades.


Feel free to leave a question in the comments, or share your own experiences. Knowledge is power, and I would have liked to know what to expect before I did this.

46 Responses to My Aspirin Desensitization At The Mayo Clinic

  • Hope this is a permanent good outcome . Good breathing . Fall is usually my bad asthma season!

  • Thanks, Lin!@ me too. I would love to go through a winter without a sinus infection. And of course, I’d really love to smell Thanksgiving turkey roasting. 🙂

  • Oh, I’m so glad everything went well. I was worried about you. Hope all it still well next month when roast turkey is in the air. Everyone deserves to smell that!

  • Hello and thank you for your really interesting post! I am hoping to go through the same procedure this year to help with polyps, sinus problems, asthma and no sense of smell or taste. How have you got on since last year? Did your smell get any better? It would be great to know how you found it. Thanks Ruth

    • Hi, Ruth! I did quite well for several months. I had some taste and smell for about a month after the procedure, but it faded. Still, I am polyp free and breathing well with no trouble from my asthma until about two weeks ago. Two weeks ago we had some pretty cold temps (-27F with wind chills of -40) and my asthma began to flare up. I now have a sinus infection. My ENT saw some thickening of the mucus membranes but still no polyps. So although I HATE the fact that I can’t smell at least I can breathe. I don’t regret doing the procedure. I can take aspirin and even drink wine without my nose clogging. Just have to kick this sinus infection and hopefully I’ll be feeling a lot better. Most people seem to have better luck than I do getting and keeping a sense of smell. Wishing you the best of success, Maddy

  • Thank-you for posting this. It was very informative to learn about the procedure from a patient point of view. Reading about your experience has alleviated my apprehension about having it done.

    • I’m so glad! Sorry for the tardy reply. I’ve been out of town. I hope you have a very successful desensitization and your quality of life soars off the charts. 🙂

  • Was just reading your article and looks like it’s been about a year? How’s the smell, taste, recurrent infections? I’m considering the procedure. Also, prior to procedure, did you ever have similar reactions to toothpaste?

    • Hey, Kim! I think in general, I’m better. Not great. But I have regained SOME sense of smell, and can breathe through my nose again, and I have had only 1 round of antibiotics for a sinus infection. So although I’m not smelling or feeling as well as I’d like to, I am better. Am I glad I did the aspirin desensitization? Yes. Would I do it again? Yes.

      No, toothpaste hasn’t ever bothered me.

      I wish you the very best of luck with your procedure!

  • Thanks for this post Maddy and asking other’s posts regarding your current well-being. I am considering having the procedure done after the new year. I am AERD and have had two sinus surgeries so far to remove my polyps. Do you know if your polyps have returned? Are you on the budesonide wash daily? Thanks again!

    • I replied privately to Maureen, but thought I’d share a little here too, so others can know what is up with me.

      I am taking two adult aspirin each morning. So far I’m not having any gastro trouble like some people do. My insurance doesn’t cover the budesonide rinse, and I simply cannot afford to buy it, so I have not used it for over a year. I last saw my primary provider in November and she said she didn’t see any polyps. She wasn’t using an endoscope, so there may be some way up in my sinuses. I had lost my sense of smell by late November, but she gave me a kenalog short and now I can smell again. My asthma is slightly worse, but a hit of albuterol takes care of it.

      I am still glad I did the aspirin desense. Altho I’m not breathing perfectly or smelling perfectly I am better than I was.

  • This story has really helped relieve some of my anxiety. Thanks for sharing 🙂

    • Oh, I’m so glad. It’s been about a year and half since I was at Mayo for the treatment, and although I’m not breathing and smelling perfectly, it’s a heck of a lot better than it was. I am happy I did it. Wishing you an even better outcome than mine, Daisy!

  • Thank you for sharing your story, i have been trying forever to find an actual story of the aspirin desensitization event rather than just Dr research notes. I’ve had Sampters triad for 6 years now. 3 polyp surgeries. Tried everything and anything medicine wise. Singular, Zafirlukast 2x daily, multiple antihistamines even tea tree oil and a low Sal diet. Nothing has helped, now im so excited to try this.

    My question, do you still take singular or (zafirlukast, a stronger version of singular) every day? do you still use flonase or any other nasal sprays? Do you still take a daily antihistamine?

    Thank you so much!!! -Tyler

    • Hey, Tyler! I feel for you. I’m pretty sure I know how you feel, and it stinks. If someone told me that standing on my head on the corner of Broadway and Main at 5:00 on Friday would cure my polyps, I know where I’d be on Fridays at 5:00. I am so glad I did the aspirin desensitization. I take 2 adult aspirin and a zyrtec in the morning. In the evening I irrigate my sinuses with a NeilMed sinus rinse, and shortly before bed I use rhinocort nasal spray. I use my pro air rescue inhaler as needed, usually twice a week, but I also use it just before I do exercise. Just a precaution. Dr. Hagen at the Mayo clinic took me off the Singulair after the month’s supply was used up.

      I think the combination of the aspirin desense and the kenalog shot every six months are keeping me breathing pretty well. I love how right now I can smell the coffee brewing in the kitchen even tho I’m in the living room. I hope you are able to find relief too. Good luck!

  • Hi Maddy
    Thank you so much for the details of your experience at Mayo Clinic. I was diagnosed with AERD in summer of 2016 with Dr. Butterfield in MC Rochester, MN. He suggested Desensitization but I have been apprehensive due to 650mg per day for ever. I have many food intolerance issues and can not eat anything with gluten, soy, ginger, or natural foods with salicylates (most vegetables and fruits are off limits). No beer, wine or alcohol beverages. For me, this has gone on since 2007 and that was my first visit to Mayo Clinic where they started me on 80 mgs of kenalog injections that lasted about 6 months. After about 3 years of K injections, they would last only about 4 months. I had a bone density test in 2014 that revealed I was loosing bone mass so my internist at Alina stopped giving me the injections. Trust me, the kenalog makes you feel really good! But, I would stop them until they find a way to replenish bone mass…..
    At any rate, Ive been to several Chiropractors, Integrative medicine clinics and you name it. Nothing has provided relief for extended periods of time. I talked to Dr. Laidlow from Boston University to Drs. at Scripps in Sandie0go Ca. They all recommend aspirin desensitization. I still don’t agree. Except for today after reading your post. Im now reconsidering but it doesn’t sound like the full solution. You should feel great and be able to smell, without the K injections. Have you considered any alternative methodologies?
    Im presently getting Meyers infusions with high dose vitamin C added. Check out “Advanced Health and Wellness Center in Edina Mn.. I have had 2 infusions of 4 recommended. I am under the impression that it takes about 4 infusions to get things working again. Will let you know how this method goes. Thanks again and hope you are feeling much better.

    • Thanks for your comment, Ric! This stupid condition that we have is so disheartening, isn’t it? Why can’t they fix us????? It’s spring, so my sinuses are suffering again. But normally at this time my nose would be completely clogged with little if any air passing through it. After the aspirin desense I can at least breathe fairly easily, if not smell. That is, I get faint whiffs of my coffee, but that’s just tantalizing, not satisfying. I was really afraid that the aspirin would cause me gastro distress, but so far it hasn’t. *knock on wood* I have not heard of the Meyers infusions. I’ll have to research that and see if it is something I might want to try. Most of the time I’m content with how I’m feeling. But every now and then I’ll wish I had a fully functioning nose. 🙁

      • Hey, thanks for replying Maddy. Yes, though I have not tried the desensitization, Im feeling really bad now too. Tempted to do a coarse of Prednisone I have for backup. In this condition, I usually have the Kenolog injection but that’s out of the question for me. Left nostril is pretty much plugged and right side maybe 50%. I have used Vicks to tame the swelling down but it no longer works. Q-Nasl helped from Oct 2016 until about a month ago. I still try it, hoping it will help but nothing. It may work for you if the rhinocort doesn’t help you. My ENT prescribed it on my last exam. One thing that you mentioned raised my eyebrows: You can drink Coffee? Have you heard of a Salicylate diet? Coffee is high in Salicylates, which cause reactions like taking aspirin, at least prior to your desensitization. I would have imagined you had to stay away from all foods containing salicylates. Im on a strict diet and if I consume anything high in Salicylates, my sinuses drain and swell worse than ever. It takes about 8 hours to clear. Nothing helps just have a box of KleanX handy. My wife buys about 10 boxes every other week. My question is; did you notice that certain foods cause reactions prior to the desensitization. If so, did that go away after the desensitization? For instance, if I drink regular coffee, I start having an itchy throat and mild asthmatic reaction. Most vegetables and fruits will cause serious sinus reactions, swelling, etc.
        If this clears up with desensitization, Im going back to Mayo for Ad.
        I skipped my infusion this week due to work load. May do again next week. Its an immune system booster, high in vitamin C and others. After the 2nd infusion, I felt some relief the next day. Will let you know if it helps.

        Im sorry to hear that your not feeling very well after the desensitization. Dr. Tanya Laidlow told me in her research, Aspirin Desensitization is the most effective approach. She hoped that they will find a more effective approach in the next 5 years. My allergist said same thing.
        You hang in there. Maybe others will provide ideas that help folks like us.

  • Hey, Ric. In between my last sinus surgery and the one before that I tried a low sal diet. I didn’t see any difference. I suppose everyone is different. And I don’t want to say the aspirin desense wasn’t effective. I think it was, very much so. In the spring and fall I suffer a little bit more because of the stuff in the air. I haven’t had a kenalog shot since last september. A week ago I had about zero smell, but now I can smell a little bit. I assume and hope that it will improve as things finish budding and blooming. We had about 4 inches of snow last week, which may have helped. (good grief, never thought I’d be grateful for snow in late April!) Compared to where I was before I did the desensitization, I’m doing well. Normally, two years after a sinus surgery –heck, six months!– I would be right back where I was before surgery. You know what I mean. Sinus infections that just don’t go away, sinus pressure, face pain, mouth breathing 80% of the time, and generally feeling miserable. I got so used to eating with my mouth open so I could breathe that I still do it sometimes just out of habit. Since the desense, my nose has never been swollen completely shut so I’d have to breathe through my mouth. Even during the two sinus infections I’ve had I was able to breathe at least partially thru my nose. And only two sinus infections in two years? And both cleared up by only 1 round of antibiotics? Unheard of! So you see, I do think it has been immensely beneficial to have done the aspirin desensitization. It just didn’t cure my allergies to dust, mold, grasses and pollen.

    “My question is; did you notice that certain foods cause reactions prior to the desensitization. If so, did that go away after the desensitization? For instance, if I drink regular coffee, I start having an itchy throat and mild asthmatic reaction. Most vegetables and fruits will cause serious sinus reactions, swelling, etc.”

    Before I had the aspirin desense I could not have more than 1 cup of coffee without my nose clogging just a little bit. maybe not as badly as what you’ve described, but I limited myself, because even a mild reaction wasn’t fun. And wine? Forget it. Red wine especially made my nose fill, and my breathing wheezy. I had a much worse reaction to wine than coffee. Luckily I’m not much of a drinker but a glass of wine now and then is pleasant, and I felt cheated that I couldn’t enjoy the things my friends took for granted. Now I drink 3 or 4 cups of coffee a day without any trouble. And I drink red wine a couple of times a year with no reaction. AT ALL. Of course, I am not a health professional, but I think the aspirin desense could help you.

    And thanks for the words of encouragement. It would be amazing if they could figure out how to beat this. And do let me know how your infusions go. I’m seeing my GP in May. I’ll mention it to her.

    • Maddy, thanks for all of your help here. Im going to move forward after your testimony. As I presently feel horrible, I have to do something. I had to cut out all fermented beverages, alcohol of any type including beer. Never did much of that anyway but I loved to share a toast with family as we gathered for dinners. I take a sip at Thanksgiving and Christmas. Only one though:0)
      Your GP will likely be indifferent regarding the infusions since its an alternative approach and until I see some results for my specific problem, I’m not sure I can recommend it. You may want to research it a bit.
      AERD is pretty much considered a un-curable disease so Im more or less experimenting with the Meyers infusions. My Functional Medicine Chiropractor recommended it so Im trying something.

      Your allergies just ads another component to it all. I never had allergies and test negative for all. In 2007, I was diagnosed with gluten intolerance, then soy, and ginger. During this, I happened to break my foot so took some Advil and went into an acute asthma like attack. Got through it but never took any Nsaids since.
      Stay in touch. Will fill you in on any new developments. Bless you for listening.

      • Hey, Ric, Keep me posted. I hope the desense will be very effective and change your quality of life immensely for the better.

  • This was great…I’m doing AD in a week..Still very nervous, as I too remember my bad reaction bout 20 yrs ago. But comforted by reading yours..My sinus issues seem exactly the same as yours and others on this blog…Hope it goes well and helps!

    • Hello, Julie! I have found the aspirin desense to have been worth it. I hope you do too. Good luck!

  • Hello Maddy, .. I too have gone through aspirin desensitization in October of 2016 following 1.5 years of being so sick with sinus infections, asthma, etc. I had one sinus surgery in Nov. 2015 and one in Dec. of last year just 2 months after my desensitization – I needed the surgery at the time of my diagnosis, but was advised to go through the desensitization since I was already at the hospital (National Jewish Hospital in Denver, CO). I was told it takes 6 mos – 1 year to realize the results of the desensitization – I have just rolled into my 9th month. Overall, my health is much better even though I still have not regained my sense of taste and smell. I have not had a re-check for polyps since Feb. of this year so that verdict is still out. I know everyone is different, but for me, I struggle with the asthma aspect of Sampter’s more than anything. I’m still taking Montelukast once per day and doing the Budesonide rinses 2 times per day. I also use Dymista nasal spray morning and afternoon. Because the asthma is still a problem, I use the Advair inhaler morning and afternoon and the albuterol inhaler as needed. What has been so strange in my experience is the fact that I will have a really great week or month and be able to skip the Advair and albuterol and then the following month, really struggle with the asthma and coughing up phlegm. Maddy, was your experience cyclical in that way – – really good for a week or a month and then a set-back? As far as sinus infections, I have not had one since fall of last year and I definitely attribute that to the desensitization and if anyone is considering the procedure, I highly recommend it. Initially I was on 1300 mg of aspirin/day and after my six month mark, I dropped down to the 650 mg mark. Prior to getting sick in June of 2015 I really didn’t have asthma…I had it as a child but had outgrown it. Would really like to know if others struggle with the asthma aspect of AERD. In addition to the meds I mentioned above, I also receive allergy injections once a month. I’m thankful you have shared your experience and that I found this forum, there’s still not a whole lot of information on AERD/Sampter’s Triad – I think Amazon has 2 or 3 books on the subject. Thanks again, and would love to hear your response to my questions when you have the time. Mindy

    • Hi, Mindy! Thanks for sharing your experiences. I don’t think my symptoms are cyclical. That is, they are in a way, because I get a kenalog shot in the fall and spring. For three months after that I feel great, and use my inhaler only before exercising. Starting around the end of the third month I start wheezing, my nose gets clogged, and my sense of smell goes back to nothing. I wonder if your asthma and allergies are more advanced than mine. Do you know about the Samters Triad Support Group on Facebook? I think there is a lot of info there, and people who really understand. Not everyone can understand what it’s like to not be able to smell your morning coffee or the scent of apple pie baking. 🙁

      • Hi Minda! thanks for sharing your experience. I had this problem of sinusitis, nasal congestion asthma when ever I had tomatoes, chinese food and tablets ibuprofen. It was very debilitating. Few years ago I underwent aspirin desensitization in New Zealand. They start youn on 15mg of aspirin (dissolved in water) every day for a week and the dose is increased incrementally up to 600mg twice daily. It works. My symptoms have improved significantly. I’m now down to 300mg/day twice daily. I do get occasional flare ups (like nasal congestion, sinusitis) and for those periods I’m put on a short course of steroids for a week. The frustrating aspect is that not many general practitioners are aware of this condition and every time you see a new doctor you have to tell them the whole story. Last month or so I developed severe reactions to apples. I deliberately ate an an apple yesterday to rule in or out reaction to an apple and to my disappointment , I’m now down in bed with sever cold, cough and asthma like symptoms. I know that apples do contain salycylalates for never thought they would cause me such a severe reaction.

        • Sorry I missed this post. My apologies, Ramu!

          It is very frustrating and disheartening that this condition is not getting more attention. Yes, even doctors don’t know about it unless they specialize in ears, nose, and throat. It sounds like the aspirin desensitization is done differently in your part of the world, but as long as it works it’s all good. I’m sorry that tomatoes and apples give you such a hard time. I love both! For me it is wine. Since I drink very little, that is ok. Another person posted that hopefully we’ll have better treatment options in the future, and I wholeheartedly second that. Sometimes I’m so sad that I can’t smell.

  • Hi Maddy,
    Just an update since I had sinus surgery on 7-31-2017.
    Mayo Clinic pretty much wouldn’t do AD due to the condition of my sinuses. Many polyps and all closed up due to swelling. Nothing was working to calm them down except Myers infusions with high doses of vitamin C. That would give me about 1-2 days of relief.
    After surgery nasal passages were open again. Taking some time to heal but feel much much better.
    Went back for post surgery evaluation and orientation on Aspirin Desensitization and Dr. Li pretty much talked me out of it due to possibility of mucosal damage to gut. He thought it would be risky and agreed that it can be a problem with some people. The surgeon was a bit confused but is now recommending Budesonide nasal flushes to reduce re-occurrence of polyps. Have not started that yet until insurance covers it. I do have sense of smell coming back and can actually breath through my nose better than ever!!

    Recent research:
    NO donor Aspirin to prevent damage to gut. http://pubs.acs.org/doi/full/10.1021/jm701104f

    Probiotics for Sinus infections: http://lactobacto.com/sinusitis-treatment-summary/

    I think we will soon have more alternatives and possible cures for this weird disease. Hoping and Praying for it and for all who have suffered from it.
    Take care,

    • I hope you are right and there will be more and better treatments for us in the future. And meanwhile, yay! for breathing better and smelling!

  • Hello. Thank you for this post. Glad to know you are feeling bettee. I did my aspirin desensitization in 2012. I have been taking 325mg and was congestion free all these years. But I am starting to feel congested and sinus pressure again. Anyone here who has desensitized and how are they doing?

  • Hello Maddy

    Thank you for your post. Glad to know you are feeling better now. I had my aspirin desensitization in 2012. It was recommended that I take 625 mg of aspirin per day, I only took 325 mg. All these years I have been nasal congestion free when the past six to eight weeks of started to feel congested again. I’m curious if there is anyone here who has been desensitized and how they are doing now? Anyone out there who can help? Looking connect with people to share experiences.

  • Thanks for posting Maddy. I have had 7 surgeries to remove polyps and am asthmatic. Life is miserable. After reading this I am going to push for the aspirin desensitisation now xx

  • Has anyone’s doctor recommended they go on Xolair? My daughter’s immunologist wants her to try it as supposedly they have had some success with this off-label use of the drug for AERD. She’s afraid to try it because of possible side effects, so we have an appt for Aspirin desensitization with Dr Laidlaw in Boston just before Xmas when she is finished her exams. Very few doctors use AD in this part of Canada, so we are headed to the USA and will have to pay for this ourselves.

  • Has anyone’s doctor recommended they go on Xolair? My daughter’s immunologist wants her to try it as supposedly they have had some success with this off-label use of the drug for AERD. She’s afraid to try it because of possible side effects, so we have an appt for Aspirin desensitization with Dr Laidlaw in Boston just before Xmas when she is finished her exams.

  • Thanks so much for sharing. I just had my 5th surgery Sept. 12th for Polyp removal at the Mayo Clinic . I have had these issues since I was 17 and am now 47, I am tired of suffering. I also have Samters Triad. I am doing the aspirin desensitizing on Monday Oct 23 rd with Dr. Li and am very nervous. We live in PA and have to fly out and stay for the week. This is my 3rd trip out there since Sept 12th. I am praying that I have the same great results as you. Thanks so much for helping put my mind at ease( a little) lol

  • Hello Maddy,

    I have AERD. I discovered this back in 2008 when I reacted to aspirin, ibuprofen, and naproxen, over perhaps a 6 month span. Nasal polyps developed a few year later, and worsening asthma. I lost my sense of smell around 2014, then had my first sinus surgery.

    The condition is currently managed with a steroid-based nasal spray, montelukast, inhaler, and sinus rinse.

    I regained my sense of smell in 2015 after the addition of an oral decongestant. I lose my sense of smell within about 36 hrs if I don’t take it once or twice daily.
    I use Reactine Allergy & Sinus.
    I haven’t done desensitization as my condition is currently managed.

    Have you ever tried an oral decongestant to aid your sense of smell (although certain medical conditions, like hypertension, would make decongestants contraindicated)?

    If I eat high salicylate foods such as spicy food or alcohol (particularly wine), I lose my sense of smell immediately, but regain it pretty quickly after a day of so if decongestants.

    Although NASAL decongestants cannot be used chronically due to the risk of rebound congestion, this does not occur with oral decongestion. Perhaps worth asking your doctor about?

  • Hi,
    4 months after sinus surgery and just using budesonide nasal flushing, the swelling and head pressure has returned as well as loss of smell. Now considering Xolair but a bit apprehensive due to side affects. I checked on Reactine Allergy & Sinus and its available in US as Xertec, which I may try since its OTC. Also have increased intake of Omega 3s and decrease of Omega 6 to balance out as in trial study at AERD Center at Brigham and Women’s Hospital. So far no substantial changes.

    I hope you are doing well and good to hear from others regarding this condition. Anybody who finds benefit with other supplements and treatments, please let us know!!

    • If your eosinophils count is high enough, ask your doctor about Nucala as it has fewer side effects and might be more effective than Xolair. My daughter’s appt with the allergist is in 2 weeks and I’m hoping she will meet the threshold necessary for Nucala given the reduced side effects. The protocol appears to be very similar in how it is administered.

    • I keep hoping a cure will be found. It’s good that at least we can treat the symptoms, but let’s be honest, the treatments are entirely effective. 🙁

  • Went to Mayo for post surgery eval and very much like sinus infected. Prescribed more Bactin antibiotics that made no difference. Labs came back with normal eosinophils and high Leukotrines suggesting Mastocytosis but apparently just AHERD confirmed. Nothing is working at this time. Xertec doesn’t touch it for me. Considering a trip to Boston if I hear somebody give the 5 star recommendation.
    Maddy, did you mean “ineffective”?

    • 🙁
      Ric, how disappointing! When will they find a CURE for this crap? So many advancements in medicine, but no one can fix this problem. If you’ve got toenail fungus or restless leg syndrome, you’re golden. If you want to breathe through your nose forget it. 🙁

  • Hi, I just finished my 2 day aspirin desensitization today. It went very smoothly. I had my first asthma attack in 1990, after taking 2 aspirin. Then my sinus problems started and I’ve had 3 sinus surgeries since then. (3rd was Dec 2017). My sinuses are clear & I can smell again. I really hope the desensitization works & keeps them clear. I hope my stomach can tolerate 2 aspirin twice a day.

    • Hey, Gerie! Thanks for posting. I was concerned about the aspirin too. My stomach is not made of cast iron. But I’ve had no real problems. I almost always drink a small glass of milk with the aspirin. Don’t know if that is what is preventing trouble, but I figure it can’t hurt. Here’s hoping you won’t have trouble either and the desensitization keeps you breathing freely and smelling everything. 🙂

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