Let’s talk about one of the most popular topics in food allergies today…Xolair. When the idea of Jaxson taking these injections was first introduced, you can imagine that having over 20 years of experience clinical trials came in handy. I went straight to the publications, reached out to Principal Investigators (doctors who run the studies in their clinics) and sought out articles written by past Xolair patients. Note: I am not going to give medical advice here but I will describe our experience to date and the top things to know before heading to the clinic.

8 Essential things to know:

1. This medication is expensive and your insurance may not cover it. We go to Allergy Partners of Chapel Hill, NC. Our office was phenomenal in walking me through the process. They completed all the paperwork and submitted to my insurance. It turned out the drug was nearly covered by my insurance, Aetna. The remaining balance was paid for by the drug manufacturer, Genentech. So, if you do the math, we have no copay. We are VERY lucky as I know many patients who don’t have this luxury.
2. Xolair is an injectable. It is not available in pill form. Unfortunately, this means it is not pain free. Its a thick, refrigerated subcutaneous injection which means it goes directly under skin (not in the muscle). The good news is that you don’t get a sore arm for hours like you do with the Flu shot. Typically, the medicine accumulates under the skin and then dissipates over time. Jaxson always says it burns in the arm during the injection itself but the sensation quickly goes away. Since Jaxson is only 11 years old, he’s not eligible for the auto injector. Only kiddos age 12 and up are approved to use the auto injector. Ours comes in pre-filled syringes.
3. Your dosage is unique to you. That also means, depending on your dosage, you may have multiple injections to receive the correct dose. Jaxson receives the highest dose approved for food allergies, 600mg/ml divided over two syringes (300mg/ml each) every two weeks. He gets one shot in the right arm and one in the left. There is a formula/chart that your doctor will use to calculate the dosage. There are a variety of combinations as it comes in several strengths: (75 mg/ml, 150mg/ml, and 300mg/ml).
4. Xolair is refrigerated. The drug should remain in your refrigerator until ready for use. Our doctor’s office recommended taking the medicine out of the refrigerator one hour ahead of time to make the injections go smoother. Due to the timing, I have to set a reminder to take it out of the refrigerator. Luckily I work from home, so this is easy for me to do. Otherwise, you need to plan ahead.
5. The first few injections are in the clinic and there is an observation period. This is so medical personnel can watch for any reactions. Due to the nature of this drug, there is concern that the patient can react shortly after injection. We had three uneventful injections in the clinic. Its a longer visit so prepare and plan ahead!
6. After the first three injections, you will have the opportunity to inject at home. There are pros and cons to this. Pros are that it is convenient. Cons are that you have to ensure you order and get the drug shipped to your home in time, and also have a caregiver that feels confident enough to administer the injection. Even with my clinical background, I am not great at giving these injections! As with anything, practice helps but Jaxson doesn’t love that!
7. Hydration the day before and day of injection is very helpful so I pack Jaxson Gatorade to drink at school throughout the day. Also, your clinic may vary, but our doctor asks that Jaxson not engage in physical activity for 2 hours post injection. Therefore, I make sure that we do injections on non-soccer days and usually right after school (3:30pm).
8. Xolair’s approved use is important to understand. Every drug comes with a package insert that describes the FDA’s approved indication. In addition to moderate to severe persistent asthma, chronic rhinosinusitis with nasal polyps, and spontaneous urticaria – we now have IgE- mediated food allergies since February 2024. More specifically, “patients aged 1 year and older for the reduction of allergic reactions (Type I), including anaphylaxis, that may occur with accidental exposure to one or more foods. To be used in conjunction with food allergen avoidance”. (https://www.gene.com/download/pdf/xolair_prescribing.pdf) This last part is key. Make sure you set your expectations with this entire process. You may find yourself taking these injections for months and still avoiding your allergens. At its current state, Xolair is meant to be a safety net for accidental exposures, not a cure or treatment. There is a lot more research coming and believe me, I will be watching and reading! Please consult with your physician on all of these medically related topics!

Those are my top things to know ahead time. It takes patience, planning, some education and lots of love after the injections. I will be posting more detail on each of these top issues to help you along the way!