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  • understanding IgE levels and Xolair

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    Old 11-10-2014, 11:17 AM   #1
    nolachick
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    understanding IgE levels and Xolair

    Hi, I am hoping to find some assistance here to help my father, he is 82 and has a chronic asthma problem. He has been on steroids, albuterol, a nebulizer etc etc, and the continuous use of steroids is having a terrible impact on his health. I am trying to understand if we just need a new physician, or if there is something more we can do to lower his IgE levels.

    After pushing his pulmonologist if there is ANYTHING to be used besides steroids at this point (they are needed more and more frequently now), he finally mentioned Xolair. But he said my father's IgE levels were too high to use Xolair right now (they came in at 629 IU/ml), and the desired "normal" reference range is 0-100.

    After doing a lot of research myself, it seems that some people with EXTREMELY higher levels of IgE levels (some into the 10's of thousands) were able to get on Xolair, and I believe this is what my father desperately needs.

    Does this number 629 actually calculate HIGHER? Not sure what the IU/ml is in relation to all the people I have read mention on forums, many people wrote about having 30,000 / 52,000 / 70,000 / ... numbers REALLY high like that.

    Also, I asked his physician what could be done to lower IgE levels to be able to get on it, and he said "nothing"! Then through my own research I found a physician that said taking NAC (N-acetyl cysteine) along with Vitamin C will help, the NAC directly blocks IL-4, which is the main factor in producing IgE antibodies.

    Anyone have experience or knowledge on what your levels have to be to take Xolair? Anyone have a recommendation of a good pulmonologist in the Houston area?

    Many thanks!

     
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    Old 11-10-2014, 05:22 PM   #2
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    Re: understanding IgE levels and Xolair

    I am a little confused. When you say "steroids", which ones are you talking about? His inhaler? If he has asthma, he should be on a steroid inhaler and there is no cure for asthma and no substitute for it. Or are you talking oral steroids? That's an entirely different subject. And is his asthma allergy induced? You don't say so am not sure why you're concerned about adding basically an antihistamine if allergies are not an issue. Sorry I don't have more to offer but am just confused.

     
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    Old 11-11-2014, 07:53 PM   #3
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    Re: understanding IgE levels and Xolair

    Xolair is intended for allergic asthma.

    You didn't mention, does your dad have allergies? Has he been tested? If he has them, does he take medication or shots for the allergies?

    Is your dad on an asthma action plan with the Pulmonologist?

    Titchou asked a good question above. What steroid medication is he on? It is a daily preventative medication like Advair, Dulera or Symbicort? If so, is he on the higher dosages of those medications? If not, why not? If asthma is bad, a daily preventative medication is usually indicated. If you are talking about an oral steroid like Prednisone I understand why it could be impacting his health more. My Pulmonologist only likes me to be on it as a very last resort.

    I'm on a daily preventative medication. When I'm doing well, I'm on a lower dosage, when I'm flaring, I'm on the higher dosage. When I flare, I also add Singulair in. By itself, I didn't find it to be great, but combined with the daily preventative medication, it helps me. I also use the albuterol inhaled or in a nebulizer when I flare.

    For the allergies, I'm on allergy shots. I'm no longer on it, but I used Allegra and nasal sprays for allergies for many years.

    When the asthma stopped being well controlled with the treatments listed above, my doctor recommended the Xolair. I can't remember what my IgE was at the time (maybe around 150), but it was considered too high for my doctor to get insurance approval. He did appeals for 6 months because he really felt it would help me. I ended up applying to the manufacturers foundation for assistance. They gave approval fairly quickly based upon my doctor's referral and the fact my income was below $150,000. I'm 3 years on the Xolair and no longer on any of my allergy medications (regularly, as needed during high pollen days). My asthma has been better, but I do get flares. The thing about Xolair though is it takes time to work. I noticed a bit of difference in several months, but I was about a year out before I realized how much better I was doing. I also found the Xolair to boost the effectiveness of the immunotherapy.

    As for the IgE being too high, I'd worry about intentionally trying to lower it. I have no idea how you would even go about doing something like that.

    One more question. Does your dad have acid reflux? If not, has he had testing for acid reflux? A barium swallow/esophagram, manometry, 24 hr pH testing? Acid reflux can present without the traditional 'heartburn' symptom. It is called 'silent' reflux. The acid can cause lung irritation and asthma type symptoms as well.

    In my case, I ended up needing a Gastroenterologist, Pulmonologist, ENT/Allergist and my PCP to get my asthma under control when it flared bad years ago. It took addressing the asthma, acid reflux, and allergies at the same time to get the asthma symptoms under control. I had no idea my reflux was so bad until I was tested by my Pulmonologist after my first visit.

    Also, if he lives somewhere that the weather is turning cold, make sure he has warm coverage over his mouth and nose when he goes outside. A humidifier is also a good investment for this time of year.
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    Last edited by MountainReader; 11-11-2014 at 08:06 PM. Reason: added information

     
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    Old 12-13-2014, 10:14 AM   #4
    dirt engineer
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    Re: understanding IgE levels and Xolair

    You are supposed to be eligible for Xolair at IgE levels between 30-700. You need to educate your doctor. I have heard of people being on it who were a lot higher.

     
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