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.