DS\' and my dr. wants **ME** to try Xolair

On this board, I think it was said that if you go on Xolair for food allergies, you have to be on it forever. Maybe if you go on it for asthma, it is different? Our allergist also mentioned the risk of cancer, and said he would not want dd on it long term due to the cancer risk. This was in regards to pa, because her asthma is very well controlled, so she would not need it for astham. He said if it got approved, she could have Xolair for a high risk situation like sleep away camp (which I would probably never do anyhow) but not long term due to cancer risk. The cancer he mentioned was not lymphoma---it was skin cancer. I am sure that`s what he said, because I have had skin cancer, so the whole thing worried me. There seem to be so many different opinions about Xolair, it is just so hard to know what to think.

I was the one who was told DS would have to stay on the Xolair forever. However, at our appt. yesterday the pulmo. ammended his statement. He said that he's come to believe that some patients can go off of Xolair and even suggested that DS's lungs were in such great shape that he would be a candidate to go off it. (I think you probably have to gradually wean off it so as not to flood your system with IgE.) I told him that wasn't even an option for us because of the improvement in DS's food and enviro. allergies. When I told the nurse what the dr suggested she said "I'd be seeing a [i]lot[/i] more of you if DS went off the Xolair."

Carefulmom, Xolair isn't something that can really be used for specific circumstances as you described. It takes at least 3mos. but up to 6mos. to reach effective levels. We saw enough improvement by 3 mos. to ease up with DS's restrictions.

Rebekah

Thanks Carefulmom.

Rebekah, how old is your DD? Is she also PA? I'm sorry--I haven't gone back to check your posts about this. It's something I was going to do (and the others who've posted about being using Xolair) in the process of considering it.

Have you noticed any negative side effects?

Have you noticed improvement with other allergies--to say cats or dogs? Seasonal allergies? Or PA??? How long as DD been on it? What kinds of tests are they doing to make sure she's not having negative side effects (I mean really negative side effects)?

I look forward to seeing what all you've posted.

It's my DS who's on the Xolair. He's just turned 9 this week. He began taking it when he was only 7 (July 2004). Our insurance company approved it without question even though he wasn't 12 because they'd seen what asthma was doing to him (and their bottom line). Since that time we've switched insurance companies and once they received his records they too approved the Xolair - even going as far as to suggest to the doctor that he give it to DS every 2 weeks instead of every 4. That would double the cost to the company (from $1000/mo to $2000/mo), but they saw in black and white just how much it has helped DS. (The doctor feels he's too small (53 lbs.) to get more frequent doses and since the monthly dose is working for him we see no reason to get more shots.)

Yes, he is PA with a very long (longest I've seen on these boards) list of other food and enviro. allergies. In the first year he was taking Xolair, he used his inhaler fewer times in the [i]entire year[/i] than in just [i]one day[/i] during an exacerbation before Xolair.

We've seen a miraculous improvement in all his allergies. Before Xolair, if DS walked into a house with a dog - even if he didn't touch anything - within five minutes his eyes would swell shut, hives, wheezing, etc. Now, we have a dog (large w/ long hair) and I've even found DS sleeping in the dog's crate with him. Not so much as a single hive or sniffle. DS routinely had to miss at least 4 days of school per/month for asthma or illness. Last year he had no sick days. Because the Xolair has prevented his allergic asthma and allowed his lungs to heal, his excercise induced asthma is gone now as well.

I know this all sounds too good to be true and if it wasn't happening to us I would find it really hard to believe. I just can't say enough good things about Xolair. Do I worry about possible/remote chance side effects?? NO! The side effects of all the meds and illnesses and anaphylactic reactions were definite and immediate and IMO much more of a concern. Of course, we still avoid peanuts/nuts and always will. I believe he would probably still react, just mildy - but I don't want to find out.

Feel free to ask any other questions you have about our experience with Xolair.
Rebekah

Also, when you emailed me, didn`t you mention that he is now able to tolerate some foods he was allergic to before? Not peanuts, but something else?

About the possible cancer, I would love to read something about it. Maybe when I have time I will do a search. If it is skin cancer, that is bad enough, but if it is lymphoma that is even worse. However, maybe it is one of those things where the risk goes up, but is still really low. For example, maybe the risk without Xolair is one in 10,000 and with Xolair 5 in 10,000 (I am just making up these numbers). I guess I would like to see what the numbers are, but maybe they haven`t studied enough people on Xolair to even have numbers.

Quote:Originally posted by Carefulmom:
[b]About the possible cancer, I would love to read something about it. [/b]

I'm interested too:

[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum22/HTML/002689.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum22/HTML/002689.html[/url]

Thanks, Momma Bear. I just responded in the other thread in Off Topic.

Yes, Carefulmom, he is able to tolerate all the foods he is allergic to. We have not and will not feed him peanuts/nuts, however, to see if he can tolerate those. We also haven't tried shellfish and only limited fish (tuna) since DD and I are both allergic.

Here's what we had to avoid before Xolair:
egg
corn
soy and all legumes
yeast
potato
wheat
carrot
mustard
fish
shellfish
peanuts
tree nuts

Rebekah

I went to my allergist today, and I have some hopeful news. Recap: In Dec 2005, a few months after the post above, I saw him, and he brought up a Xolair trial (but I would have to be PA and asthmatic I think). At the time I thought I was, but my immunoCAP tests came back negative for peanut. I am still unsure about it. I am shellfish and sesame, and they've been getting worse.

Tonight I told him about my increasing sensitivity to shellfish and sesame, and in talking about a few other things (cats/dogs/asthma), we talked about Xolair.

He said that he learned just last week at a conference, Genentech presented some findings (they just bought Tanox, which was headquartered here in Houston, BTW). It seems that only about 25% of the FA folks on Xolair see improvement. It's only effective for a quarter of the FA folks taking it.

But he said that considering my sitation, we could try it.

I didn't have a total IgE count done already, so he took blood for that. That's the first hurdle. If it's high enough (so I'm hoping for that??!!??), then we move forward from there.

Perhaps it's premature, but I'm very excited. My allergy gets in the way of my doing my job. It's really impacted my life. And if this works, it will be a very good thing.

He also said there are some other options coming down the pike that he thinks will be more effective than Xolair, but my having Xolair shouldn't preclude moving to one of them later.

For now, I'll hope for Xolair. I'm so excited at the possibility of having improved asthma and not having all these reactions.

Good news . . . I think. My total IgE level qualifies me for Xolair. Now we'll await the answer about what insurance will cover. If it doesn't cover a significant portion, I'm afraid it will be a no-go for me.

We'll see!

Yippee!! This will work for me. It will be less than $50 per month, including the cost of the prescription and the injection, which is affordable right now.

Now all I have to do is wait for my doctor's office to be sent the Xolair (it was going to be sent to my house, but I changed that), and I'll start! I'm really hoping this improves my asthma--as well as shellfish reactions.

That is great news McCobbre! I hope it gives you some relief.

Hurray! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

You must be very excited! (And especially so since you'll be able to 'test drive' it yourself rather than DS, huh?)

Even better that it is going to be so affordable. That is wonderful.

I hope it re-opens all the choices that you miss, McCobbre. What a happy day for you, and for DS and DH too!

My Xolair is in!!! I won't have time to get my injection tomorrow, but I'll go Wednesday. I'll let you know how it goes.

I'm so excited! I've been getting horrible rashes at the drop of the hat. I'm looking forward to seeing how it affects my asthma. I'm hoping I won't be so allergic to cats and dogs, that I'll be able to hug people without reacting. And--gasp [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img] hopefully it will make my food allergies more manageable. I know I have a lot of expectations. We'll see how they pan out.

Good luck with the shot tomorrow - I'm excited for you!

Rebekah

Congratulations McCobbre! I hope it makes a difference for you.

Anxiously awaiting your results on the seafood reactions! Hope your shot goes well.

Daisy

Yippee--had my first shot last night (I was sick two weeks ago so didn't go and the office was closed last week for Spring Break).

It didn't take as long for the injections (one in each arm) as I thought it would--about 20-30 seconds each.

I did start to feel spacey about 15 minutes after though. My doctor wasn't in the office, but I told the nurse. That's all I felt, and I felt that way until I went to bed at 10:00 (I got the injection at 6:40 last night). Before I went to bed it occurred to me to take a little Benadryl, which I wish I'd done before. I don't know if the Benadryl provided relief or if it just went away on its own.

For those of you who don't have my reaction symptoms memorized, spaciness is my first symptom, so that's why I was concerned.

But it's been 23 hours since, and I'm fine--no anaphylaxis. I'll talk about the spaciness with my doctor, but I'm not very concerned really.

Okay, and so I shook someone's hand today and apparently brushed my hand against my face before I could wash it, and darn it, I still developed a rash. Doesn't the Xolair know it was supposed to cure that already??? [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]