carefulmom.......Xolair question

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Have you tried Xolair.....did your insurance cover it or were you in a study group? Thx

On Nov 19, 2005

Hi, no dd has not gotten Xolair. It came up with her allergist a couple of years ago. We talked about putting her in the study for pa. I seriously considered it, but decided not to. The way the study worked was to see how much peanut the person could tolerate. They started with tiny amounts, and kept going until the person had a reaction. So they measured how much peanut the person could tolerate before treatment. Then they randomized the two groups. One group got Xolair, the other got placebo. After several months, they again did a peanut challenge and found that most of the ones who got Xolair could tolerate more peanut than at the beginning of the study. For the placebo group, they could not tolerate more peanut after the shots of placebo. Her allergist and I talked about putting dd in the study, so that she could possibly get Xolair, since it is not yet approved for pa. However, due to the peanut challenge at the beginning and the end of the study, I decided not to, especially since she might not have even gotten the Xolair (since she could have gotten placebo).

We do have a member here who was in the Xolair study, and I don`t remember who it was. We also have a member whose son is getting Xolair for asthma, and it has helped with his food allergies quite a bit. It is Rebekahc. Rebekahc, are you out there? I`ll try to find some of her threads. My dd cannot get Xolair for asthma, as her asthma is very well controlled, so Xolair is not indicated for her asthma. Rebekahc did get insurance to pay for her ds`s Xolair for asthma, but they had already paid quite a bit for all the expenses when his asthma was flaring up all the time, so it benefitted the insurance company to pay for his Xolair. It actually saved them money compared to what they were already paying for his asthma. Rebekahc, if you are reading this, feel free to jump in.

On Nov 19, 2005

Here you go. I hope this works. I always have trouble posting links.

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/006636.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/006636.html[/url]

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/006063.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/006063.html[/url]

This one is about the Xolair for pa study. This is the study we talked about with the allergist. We have a member whose child is in the study. [url="http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000203.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum16/HTML/000203.html[/url]

On Nov 19, 2005

We must try Xolair as we have little choices. My son's IgE is just too high and with too many medical issues (so Xolair no matter what the copay might be). Will speak again with the allergist on Wed.

On Nov 19, 2005

So would you be using it for pa or asthma? If you are using it for pa, I`d be really curious as to what your allergist says: 1. Will he do it? 2. Will your insurance pay? 3. If insurance does not pay, how much does it cost you?

I have considered asking for it for dd, but don`t think her allergist would do it until it had been well studied for pa. Then I am sure my insurance won`t pay since they are not paying a lot for her pa (they have no reason to pay the way they did for Rebekahc`s ds for asthma), so I think it is about $1000 per shot???? Not sure about that amount.

On Nov 19, 2005

PA and soy....we have become severely limited. He recently had an overall IgE of 894 when 30 (I am told) is an upper limit. Last week we could not break his congestion/asthma until 2AM in a hospital which was allergy induced. It has become more and more difficult to find foods!! Fortunately the allergist will be forceful with the insurance company, but we may jave no alternative with some hope!

On Nov 19, 2005

You know, it just gets harder! Frustrating ain't the right word here...it just is difficult to the n th degree! He misses a lot of school but thank G-d he is very bright! The restrictions are so hard now.

On Nov 20, 2005

[url="http://www.detnews.com/2003/health/0306/24/health-198610.htm"]http://www.detnews.com/2003/health/0306/24/health-198610.htm[/url]

to quote:

[i]"The drug is generally safe, the FDA said. But three patients did suffer a life-threatening allergic reaction to the medicine itself. Also, there appeared to be a very small increase in the number of Xolair-treated patients who had various forms of cancer -- half a percent compared with 0.2 percent of people given dummy injections. The FDA has asked the manufacturers to continue studying whether cancer is a real risk. [/i]

[b]asked?[/b]

I've been waiting for results on this [i]request[/i], or at least indications that it is being investigated. Anyone know? Are there any studies independent of Gentech?

General Disclaimer: I am not offering advice in any manner or form. I do not guarantee the accuracy, currentness, or content of the link in this post.

On Nov 20, 2005

Lebovitz, did you read Rebekahc`s comments on Xolair in the link I posted. It worked really well for her ds`s asthma. If you are in the ER for asthma, you probably could get insurance to pay. He would get the Xolair for his asthma, and it would help his food allergies also.

Momma Bear, thanks for the link. Interesting article. Not happy about the three who had life threatening allergic reactions, but the cost is not as bad as I thought. Dd would probably need just one vial (if she ever gets Xolair for pa) as she is small in size. So it would be about $5000 a year.

On Nov 20, 2005

Thx....got the link. We just bought some choc chips for cooking without soy or peanut! Wow, how the little things can cause excitement! Were you aware that "natural flavorings" means soy lecithin and that MSG is derived from soy?

On Nov 20, 2005

Yes, sadly "natural flavorings" can be anything at all. My dd is allergic to milk and it seems like in certain products (like microwave popcorn) I really have to watch out for "natural flavorings". I have called many companies, and been told that they can`t tell me what is in the "natural flavoring" because it is "proprietary information". However, this is all about to change when the new law goes into effect. Did you know this? Starting January 1, 2006, per FALCPA, if natural flavorings includes any of the major 8 allergens, it will now have to state that. For example, microwave popcorn could state "natural flavorings (milk)". The major 8 allergens are milk, egg, peanuts, tree nuts, fish, shellfish, SOY, and wheat. The law states that anything manufactured starting 1/1/06 will have to be labeled this way, but keep in mind that items may still be on the shelf that were manufactured in 2005. So if it is on the shelf in the grocery store and says "natural flavorings", unless you know that it was manufactured in 2006, you still can`t be certain. I figure by 1/1/07 anything on the shelf in the grocery store will have been manufactured after 1/1/06, so then if it says "natural flavoring" and does not list an allergen, then it doesn`t contain milk, egg, peanuts, soy, etc.

On Nov 20, 2005

Very good to know...thx. By the way the EU has legislated removing soy protein from all products replacing it with sunflower lecithen which has been shown to have a similar cost with less allergic problems.

On Nov 21, 2005

Totally off the subject, but Careful Mom, my son is DA and eats the Act II natural popcorn. I called the company and they stated that there is no dairy. Of course, you should call yourself, but that's what they told me.

And we SOOOO know what you are going through with the multiple food allergies. My ds is allergic to peanuts, gluten and dairy. Somthing small can really make your day [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] .

On Nov 21, 2005

Yes, we know about the Act II popcorn. It is hard to find here, but when I find it I buy a bunch. Most of the others have either obvious milk, or "natural flavors". There is another one we use sometimes, but I don`t remember what it is called. Most are off limits though.

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