It has been 10 years since Xolair hit the market. Food allergies weren't even on my radar then, and I couldn't tell you much about asthma in general - let alone severe persistent asthma. The only reason that I read the article about this new wonder drug is that I was stuck in a tiny room with nothing else to do. I was annoyed with my doctor because he insisted on treating my shortness of breath and monitoring me for a while even though I had "only" come in with hives from a drug reaction. Yeah... I was clueless back then!
Whether it was a whisper from God or just because I'm a science nerd, I was compelled to read that article through to the end even though most of it was beyond my comprehension. What I did understand is that this new injectable medication, administered once to twice a month, was going to change the allergy world. One allergist was even quoted as saying that Xolair was going to put him out of a job!
When Overachiever #1 was a baby, we saw many signs of allergy. His eczema was severe and resistant to standard therapies. He always had some nasal congestion. By 5 months, he had a constant wheeze that could be heard from several feet away. As a "nervous" first time mom, I couldn't get anywhere with his doctor. Then he stopped breathing during dinner when was he was just 7 months. The ER doctor got us set up with an allergist. Skin prick testing revealed multiple allergies. We left with instructions to eliminate peanut and egg from his diet, and to find a new home for our beloved pets. There were more medications than I ever would have thought safe for such a tiny child! A home healthcare company came by the next day to deliver a nebulizer and teach me how to use it for the asthma that had also been diagnosed.
Life with an asthmatic baby was chaotic! Nebulizer treatments were scheduled for twice daily to deliver the inhaled corticosteroids that were supposed to control his asthma. Oral medications for asthma and allergies were scheduled for twice daily. Emollients were applied throughout the day, and steroid creams were added in once or twice a day to keep the eczema halfway controlled. We had to watch the clock to ensure that we were not giving too much albuterol. We rarely went a day without adding in a dose or two of Benadryl.
Beyond medication, we learned that restricting activity would limit the wheezing. Contact with furry animals must be restricted. Airborne pollens and molds are problematic, so time outside has to be limited in spring, summer and fall. Allergy shots were started at age 3 (or was it 4?) in order to give some relief from seasonal allergies. Extreme heat and cold are additional asthma triggers.
We eventually became accustomed to this new way of overachieving. Our sweet boy was just going to pick up whatever bug he encountered. He would be sicker than the rest of us, and for way longer. We settled into a pattern that included 5 days of oral steroids every 4 to 6 weeks just to keep him out of the hospital. Phrases like "respiratory distress" and "intractible wheeze" were added to my vocabulary.
Doctors started suggesting Xolair when Overachiever #1 was 3 or 4. They would tell me that this drug WOULD give him relief, but that there was no way that we could get insurance to pay for it because it has not been approved for use in children. We couldn't afford to pay for it out of pocket, so Xolair was nothing more than a carrot just dangled there to taunt us!
When our allergist suggested a few months ago that we should try to get Xolair covered by insurance, I was doubtful that the approval would go through. But we had letters of medical necessity from 3 board certified allergists, and approval was quickly granted for a 6 month trial.
It will be 2 months tomorrow since the first dose of Xolair was administered. Two months ago, Overachiever #1 could only play outside for an hour before his asthma was flaring too severely to stay out. He can now be out (even on high pollen days!) for 3 hours before he is miserable. Previously, every sinus infection led to an asthma flare and a 5-day course of steroids. We've weathered 2 sinus infections already. His asthma did flare, but we were able to manage at home with albuterol. I can't even giving the last dose of albuterol. It's been at least 2 weeks since we've had to pull out the inhaler, and I even put away the nebulizer last week because we haven't used it in a month. A month!!!
Perhaps the most exciting improvement that we've seen has nothing to do with the reason that we started Overachiever #1 on Xolair. It is the lack of symptoms related to food allergies. Almost exactly 2 years ago, ingesting a very small amount of apple cause flushing and facial swelling. It has been almost a month since we started a trial of apple. So far there has been no flushing and no swelling. In fact, there has been no sign of any immediate allergic reaction! There are some symptoms that could indicate an EoE flare, but it's too soon to say.
Xolair may not be putting allergists out of business as was once predicted, but it sure has been a miracle drug for my little overachiever!