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Xolair?

hello for the 1st time! I’ve had asthma and allergies since I can remember. I’ve been on and off meds, always prescribed my my general practitioner, as an adult because nothing ever seemed to significantly make a difference. I decided to finally see an asthma/allergy specialist when taking Zyrtec and avoiding any activity just wasn’t working anymore. I was getting out of breath having a normal conversation. I’m 34, not over weight and otherwise good health. We started on Advair 250, no change in symptoms.  Advair 500 and singulair, no change. Switched to Breo, kept singulair, and added in spiriva. This was the most successful we’ve been, my Spirometry reading being at 79. I don’t like the side effects of the breo so the doc just switched me to symbicort.

However, I still feel out of breath and feel like I need to take very deep breaths to get air. She also just ordered a CT of my sinuses. And recommend xolair. My IgE reading was 259. She also recommended I start allergy shots. 

Has anyone has success with Xolair. Any side effects? Anything else you would recommend I speak to my doctor about?

i appreciate all the help. 

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Comments 7

  • Kathy P

    Welcome Chelsea!

    It sounds like you've a bit of a frustrating journey.

    Have you already had allergy testing to determine what you are allergic to in order to get allergy shots? My allergies are a huge trigger for my asthma and allergy shots do help me.

    Did your doc say that your IgE level is considered high enough to trial Xolair? There are several members who are on or have trialed biologics like Xolair: 

    I'm going tag @LK because she's also on Xolair.

  • Melissa G

    Welcome to the AAFA forums Chelsea! 

    How long have you been taking the symbicort? Do you have an 

    Have you have allergy testing done to see what you are  Are you taking any  at home for your allergies? 

  • LK

    Welcome Chelsea!    

    I have adult onset asthma for six years now and am on several maintenance medicines, Singular and Breo being a few of them.  I have been on Xolair since last spring but, for me, I haven't noticed a huge difference.  I am allergic to dust mites.  Do you know what you are allergic to and are you able to avoid those triggers?  It has taken me a long time to realize that I truly do need to avoid my triggers as much as possible.  I also have a rescue inhaler and a nebulizer for my albuterol.  Do you have a rescue inhaler or nebulizer?  If so, do they help your breathing?  

  • Debbie Alves

    Hi, Chelsea,

    I’ve been on Xolair since 2012, with great results. It’s not a quick solution or cure, but I began noticing improvements within a couple of weeks. It’s cummulative and requires dedication (injections every two weeks, although that can be adjusted for illness). I’ve had no side effects from Xolair, and I haven’t had an allergy-induced asthma attack in more than two years.

    I have severe asthma and allergies, and Hyper Eosinophilic Syndrome. I also now have eosinophilic asthma and now eosinophilic emphysema. Because of it, I am on another biologic, Fasenra, which has successfully eliminated eosinophils in my blood since the first injection in June. This is critically important as the eosinophils could destroy my lungs or other organs. My asthma the past few years have been triggered by either eosinophils or upper respiratory infections, and they’d been very difficult to treat.  

    [Previously we had tried Nucala, which improved my quality of life EXCEPT it triggered the shingles virus and caused four corneal ulcers (which was scary-but as far as I know, I’m the only one with that particular side effect). It also had no impact at all on eosinophils, but for someone without eosinophilia, I would still recommend trying it.]

    I also tell people that they need to be prepared – biologics are among the most expensive treatments possible. BUT the manufacturers will sometimes provide it at reduced cost or free (discuss with your doctor).  This is an important reason to hope the Affordable Care Act is upheld once again by the Supreme Court, because it was the incentive for the companies to do so, and also it was how such medications were provided under Medicare/Medicaid. 

    Good luck!  Let me know if you have other questions. 

  • Debbie Alves

    Chelsea, I would second everything the others mentioned, but would also urge you ask your doctor about your eosinophil counts, if s/he hasn’t already done so. That might be a factor to consider  

    I had ZERO risk factors for developing emphysema, despite lifetime severe asthma – but my eosinophils attacked my lungs and have caused damage that is permanent (and in my case might ultimately prove fatal).  But I had increasing problems with shortness of breath etc and been diagnosed with HES 18 months before they found the emphysema and damage in my lungs. 

  • IA-TXFisherman
    Chelsea posted:

    hello for the 1st time! I’ve had asthma and allergies since I can remember. I’ve been on and off meds, always prescribed my my general practitioner, as an adult because nothing ever seemed to significantly make a difference. I decided to finally see an asthma/allergy specialist when taking Zyrtec and avoiding any activity just wasn’t working anymore. I was getting out of breath having a normal conversation. I’m 34, not over weight and otherwise good health. We started on Advair 250, no change in symptoms.  Advair 500 and singulair, no change. Switched to Breo, kept singulair, and added in spiriva. This was the most successful we’ve been, my Spirometry reading being at 79. I don’t like the side effects of the breo so the doc just switched me to symbicort.

    However, I still feel out of breath and feel like I need to take very deep breaths to get air. She also just ordered a CT of my sinuses. And recommend xolair. My IgE reading was 259. She also recommended I start allergy shots. 

    Has anyone has success with Xolair. Any side effects? Anything else you would recommend I speak to my doctor about?

    i appreciate all the help. 

    hi Chelsea,

    I will be starting my third round of Xolair injections the 26th. No negative side effects i've noticed thus far. My Dr. explained the effects might not show until after a few months or so. I had been notcing some improvement until I got a respiratory infection after the second round of injections, a week after I received them. (could be wishful thinking). I'm sure your Dr. probably already told you that. It can be a lengthy process to get approved. The risks were explained to me and seemed relatively low. They give them to you in the office to minimize said risk of reaction and it's very small. I believe the Dr. and information packet said 0.1 -0.2% of patient had a reaction. I believe he also said the reactions reported were rarer than allergy shots.It's supposed to be great for people with allergic asthma and not needing nearly as many steroid bursts and treatments. Also, I've read it reduces ER visits and hospitalizations. I wish you well in whatever you decide.