r/xolair

Hi everyone, I just got my second xolair injection. My current Ige is 3020, which is technically out of the approved xolair range, my allergist if fighting my insurance on it. I’ve had a lifetime of eczema, CSU, multiple level 4-5 food and environmental allergies. I’m on a very limited low histamine diet currently and have to stay out of the heat because symptoms flare as soon as I get hot. I’m hoping for a miracle with this drug. Has anyone had any experience on xolair with an Ige over 3000? Years ago during a severe eczema flare my Ige was 5500 so I’m glad it’s gone down over the years. I’m on all the antihistamines, Allegra, hydroxyzine, ketotifen, zertec, Benadryl but still deal with daily hives and burning skin. With summer quickly approaching I know I’m destined to another summer indoors without this medication; in 85+ degree weather I get hives within minutes. But I am hopeful xolair will save me!

I just did my first dose of Xolair, one 300mg pen and one 75mg pen. My god that was painful it just straight up burned. It’s been 3 hours and the injection area is still pretty sore and sensitive if I touch it. I did both in my thigh a couple inches apart.

No bad reactions yet other than feeling extremely tired and fatigued which the nurse warned me about. What other side effects are very common that I should be ready for? The nurse told me that injection site soreness/pain or itching is common, as well as headaches and tiredness/fatigue. Looking for any and all insight / experiences. Thanks!

Xolair has completely changed my life. I no longer spontaneously get hives. My anxiety and depression have significantly improved which I attribute partly due to less inflammation problems.
My asthma is nearly nonexistent at this point and I only need a rescue inhaler about once or twice a month (sometimes not at all even). I can run and exercise again without any issues.
I can go hiking without experiencing terrible itching or wheezing and being around friends with animals no longer bothers my allergies (although I don’t push it).
Even my nose is a lot a clearer and I no longer have a sore throat from post nasal drip in the morning.
My only issue at this point is excessive daytime sleepiness but that is another issue I’ve had for a long time and am looking into a sleep study.
Just for reference I am a 25 year old female who has struggled with severe steroid resistance asthma my whole life. This is the only medication I have found that has worked for me.
The hardest part of this medication has been prior authorizations and communicating with insurance to get access to my medication every two weeks. I have found that a lot of clinics can offer samples of Xolair if you are unable to not access it on time which can help bridge gaps when approved.
Good luck to anyone on here considering treatment. I’m sure this injection doesn’t work for everyone but it was definitely worth considering for me. I think anyone who starts this journey needs to give it a lot of time before deciding if it works. It took me around 3 months to see the full benefit.
Edit: I did have side effects at first. I felt sick the first few months (like I had a cold or flu). I often would sleep more for the first 3 days after an injection and had some muscle aches. I also experienced a runny nose two days after each injection. These symptoms gradually went away and I no longer experience them with each injection.