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Wednesday, July 28, 2010

Xolair



(photo from www.xolair.com)


I'm surprised about how many people have never heard of Xolair . Of course, it's a small percentage of the people with asthma that actually need it. Since only 5-10% of people with asthma have severe asthma, many people are unaware of Xolair.




From what I have learned so far in lay-people terms, Xolair is an "IgE inhibitor". There are different immunoglobulins in the body, but "E" is associated with allergic responses. Apparently, there are little 'mast cell' (they look like little prickly balls) in the body that are filled with histamine granules. When an allergic reaction starts, those mast cells break open and the histamine is released, thus starting the allergic response. We all know what that looks like, swelling, sneezing, coughing, etc.




Rather than treating an allergic reaction (with anithistamines), Xolair is supposed to stop that allergic reaction from taking place at the cellular level.




With #2 Son's severe asthma, we were unable to keep him stable, even after Advair, Singulair, Zyrtec and 5 year's worth of allergy shots. Despite all that, he would still end up on Prednisone (oral steroids), followed by Decadron (injectible steroids), and then finally in the hospital. Then we started oxygen and IV steroids. It was getting a little old.




Our insurance company probably hates us already, and certainly doesn't want to pay $1000 a month for Xolair (our co-pay is $150). But I have this weird thing about wanting to keep my kids alive, call me crazy.



Now my heart doesn't skip as many beats when he gets sick and his peak flow drops 100 points, I know I can give him a breathing treatment and he'll respond like 'a normal kid'. Usually, he would be admitted to Pediatrics at the hospital within two days.



I hope none of you never need to use this, it's a last resort. But when all else fails, it does help keep your child alive. File it away for future reference, just in case.....

13 comments:

  1. My daughter, 9, starts 200mg of Xolair tomorrow. You can read on my blog the slew of meds she is on right now. Is your kiddo still on Xolair? I can find so little actual-real-life-people with experience with this drug so any little tid bit you can give would be awesome. My daughter has brittle asthma and it has been hell esp. the past 4 months since she was hospitalized...

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  2. We go every month for Xolair. The first 4 months, we had to stay for 2 hours after the injection, there is a rare side effect of anaphylactic shock. We have not had a problem in 3 years of using the injections. It took about 4-6 months to build up, but after that he seemed much better. I didn't panic every time he had an asthma attack or got sick. It's not unusual for him to drop 100 points on his peak flow meter, but I know he will bounce back and not end up in the ER. It is worth every penny of the $1000 + per month. I still worry when he gets sick, but I don't have to pace the floor and stay up all night monitoring his breathing. I hope insurance covers it, we have a $150 copay but we get financial assistance. There is a great website called NeedyMeds.com. They have multiple agencies that help with expensive copays.

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  3. hi. i am 50 years old and i was on xolair for 12 months. best 12 months of my life! i was even able to go outside without a pollen mask on. good luck to you both. diana

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  4. Diane, my son has been on Xolair for 4 years now. Yes, it's expensive, but less expensive than hospitalizations! I'm glad it worked for you too! :)

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  5. Same as yall my allergic asthma has been hell for the past 2 years ,but really bad the past year and 5 months on shot and it kicked in 30 days ago ,WOW!!! what a differnce.It messed up my life(work,marriage,social life,filed for disability,etc...)got it through major sinus surgery 2 1/2 years ago(excaerbated asthma i didnt know i had by releasing aspergilus).Finally getting my life back,thanks to GOD and XOLAIR.

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    1. It's an amazing drug, expensive, but amazing! For the first time in my son's life, I don't have to panic when he gets sick. I used to automatically think "here comes another hospitalization." Now he responds like a "normal" person with asthma. He actually responds to breathing treatments, antibiotics and prednisone and GETS BETTER not worse! It has made a HUGE different in our life. I just keep hoping that insurance will keep covering the cost.....

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    2. Hi Asthma Mom,
      I'm interested in learning more about XOLAIR. How old was your son when he started taking it? How long has he been on it? Thank you!

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    3. Hi Tina,

      My son started Xolair injections at age 12 and has been receiving monthly injections for 7 years.

      It's expensive, but less expensive than another hospitalization!!

      Good luck!

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  6. I am not sure where you're getting your info, but great topic. I needs to spend some time learning more or understanding more. Thanks for magnificent information I was looking for this info for my mission.
    HCG Treatment

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    Replies
    1. Thanks for stopping by Alex.

      I get my information by living with asthma all my life and by having 3 kids who all have asthma.

      Glad this blog could help you! :)

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  7. Hi,

    My son has been on just about every allergy and asthma med possible, keeps having flare ups multiple ER visits, one via ambulance. His allergy tests are all normal, just had a low IG-G test, and the doctor wants to start him on Xolair, and I was ready and had a glimpse of relief for him in sight until I saw the CANCER warning on the package inserts. Just curious if your son is still doing well on Xolair or if you have heard or know any more details on the cancer warning? His doctor is telling us the benefits far outweigh the risks but I have reservations.

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    Replies
    1. Of course you read that as a mom and panic!

      I researched it before my son started Xolair, and the rates of cancer were less than 1%. Here is a quote from Medscape"

      Malignancies were observed in 20/4127 (0.5%) omalizumab and 5/2236 (0.2%) placebo recipients involved in clinical studies.

      Here is the link:

      http://www.medscape.com/viewarticle/494543_11


      I found this on FDA's website

      "ISSUE: An FDA review of safety studies suggests a slightly increased risk of problems involving the heart and blood vessels supplying the brain among patients being treated with the asthma drug Xolair (omalizumab) than in those who were not treated with Xolair. As a result, FDA has added information about these potential risks to the drug label.

      The review found no difference in the rates of cancer between those patients being treated with Xolair and those who were not being treated with Xolair. However, due to limitations in the 5-year study, FDA cannot rule out a potential risk of cancer with Xolair, so this information was added to the Warnings and Precautions section of the drug label."

      Here is the link:

      http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm416408.htm

      After I read the warnings, I knew that the chance that he would develop a type of cancer was less than 1%.

      However, the chance that he could stop breathing and die was VERY high. He was in ICU twice.

      My son had injections from age 12-19. He is now a junior in college and is healthy, happy, and has had no side effects and no cancer.

      Read all the research and talk with your doctor and decide what's right for you.

      Xolair was right for us. After my son started on Xolair, I saw BIG improvements.

      When he would get sick, I would give him a breathing treatment, and he would actually respond and improve! Usually, he would just keep heading downhill and end up in the hospital.

      For once, I saw what it was like to have a kid that could get sick, be treated, and head back to school (instead of the hospital.)

      Good luck!

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    2. Thank you for responding and for all the info! I'm glad to hear he did so well on the Xolair injections. I can't say my son is that bad, never been hospitalized but one trip to E.R. Via ambulance. One more question, with the anaphylaxis warning, did you keep him home to monitor him for a couples days since there have been reports of anaphylaxis up to four days after injection?

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