Has anyone tried Xolair?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
sickwithapnea17
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Has anyone tried Xolair?

Post by sickwithapnea17 » Tue Nov 01, 2011 6:58 pm

has anyone tried xolair and found it safe and without side effects long term?
I have asthma that doesn't respond to symbicort, dulera, prednisone, my FEV1 is still stuck at 73 after over a year on symbicort
Could I be getting sick from dust mites in the carpet?
18/14 bipap st

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DoriC
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Re: Has anyone tried Xolair?

Post by DoriC » Tue Nov 01, 2011 8:57 pm

sickwithapnea17 wrote:has anyone tried xolair and found it safe and without side effects long term?
I have asthma that doesn't respond to symbicort, dulera, prednisone, my FEV1 is still stuck at 73 after over a year on symbicort
Could I be getting sick from dust mites in the carpet?
I think this is a question to be discussed with your physician. I don't know too much about Xolair except that I believe it's an injection given at certain intervals in a Dr's office. There was some controversy about it's safety awhile ago but I don't know the outcome of the investigation. I would be sure that your doctors know of all the meds you take, even OTC.

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ems
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Re: Has anyone tried Xolair?

Post by ems » Tue Nov 01, 2011 9:06 pm

And, dust mites can be found everywhere... in your pillow, mattress, couch, slippers... not just in carpeting.

I've never heard of Xolair, definitely do some research and discuss with your doctor.
If only the folks with sawdust for brains were as sweet and obliging and innocent as The Scarecrow! ~a friend~

Padron192664
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Re: Has anyone tried Xolair?

Post by Padron192664 » Tue Nov 01, 2011 9:38 pm

sickwithapnea17 wrote: Could I be getting sick from dust mites in the carpet?
Might be eyelash mites. There is subtle itching and your eyelashes begin to fall out. At a time a female mite may lay up to 20 eggs in one hair follicle. You should consult your physician regarding this.

sickwithapnea17
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Re: Has anyone tried Xolair?

Post by sickwithapnea17 » Wed Nov 02, 2011 12:22 am

Maybe I need to exhaust other allergy meds like zyrtec, allegra-d before xolair. but even on prednisone I'm having wheezing and peak flow at 450
18/14 bipap st

Mary Z
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Re: Has anyone tried Xolair?

Post by Mary Z » Wed Nov 02, 2011 9:53 am

guest, why don't you follow your own advice, especially since you don't stand behind your convictions and give your name.

This person is obviously worried and concerned on many fronts. If you don't have anything constructive to help sickwithapnea, please PM your insults instead of insulting all of us.

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nanwilson
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Re: Has anyone tried Xolair?

Post by nanwilson » Wed Nov 02, 2011 9:53 am

Guest wrote:why don't you just f... o.. and go bother some other forum
Excuse me?????? Language like that is not tolerated anywhere. We may not agree with the poster but foul language is not requiered.
Started cpap in 2010.. still at it with great results.

Mary Z
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Re: Has anyone tried Xolair?

Post by Mary Z » Wed Nov 02, 2011 10:04 am

sickwithapnea17 wrote:has anyone tried xolair and found it safe and without side effects long term?
I have asthma that doesn't respond to symbicort, dulera, prednisone, my FEV1 is still stuck at 73 after over a year on symbicort
Could I be getting sick from dust mites in the carpet?

My understanding is that someone with severe asthma should not have carpet on the floors, but bare floors whenever possible to minimize exposure to allergans.
I agree with the suggestions that these are questions for your doc. Medication recommendations for asthma should not come from a forum about sleep apnea.
Also "sick with apnea" is somewhat of a misnomer, I believe. OSA is a chronic medical condition which needs to be treated, but it does not really make you sick in the usual sense. I don't think we should consider ourselves "sick".

You are posting about a lot of drugs in this and other threads. I do hope your asthma doc is aware of all the different meds you take or are considering taking. I'm sure your asthma meds have some effect on sleep architecture- have you researched this, or asked your doc?

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Re: Has anyone tried Xolair?

Post by Gaga58 » Wed Nov 02, 2011 12:41 pm

Sickwith...my daughter uses xolair shots with no problems. She's been on them about a year and a half now and this is her second time to use them. For her none of the normal asthma meds were working and still don't. About the only thing that will help is high doses of prednisone through an IV in the hospital. After ending up on a ventilator twice 2 yrs. ago and a trach put in, it was decided she was not only severe enough to get her back on the shots, but also to be put on disability. She probably wouldn't have ended up on the disability, but after 18 days on a vent she ended up with some other long term problems!

I would talk to your doctor and see about getting a igE level blood test. Xolair is not recommended, and most insurances won't pay for it, unless you have a higher than average blood igE. You might find though, your doctor reluctant to do the test...we had previous experience and already knew my daughter's were off the board, but the pulmonologist (that has since been fired!) poo pooed the idea that that was her problem. And if you get approved for the shots, don't be surprised if you then find your insurance balking at paying out the exorbitant cost per shot! Even with the proof and the disability, my daughter still goes through a rigamarole about every two months of the insurance not approving the payment for the shipment. This was the reason she had to quit taking them the first time several years ago, her insurance decided they were no longer going to pay for the shots.

It is certainly something worth checking into if you've had asthma for years that has never been controlled...good luck!

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DoriC
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Re: Has anyone tried Xolair?

Post by DoriC » Wed Nov 02, 2011 2:39 pm

Great information Gaga, thanks.

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Re: Has anyone tried Xolair?

Post by chunkyfrog » Wed Nov 02, 2011 7:27 pm

Note to OP:
Ignore the jerk/troll.
Someone usually hits their SPAM button to delete; someone still may.

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Re: Has anyone tried Xolair?

Post by osmium sleeper » Tue Dec 27, 2011 10:18 am

I absolutely LOVE Xolair. Being on it usually prevents my twice yearly bronchitis spells that are only helped out by a moderately large dose of methylprednisolone. As far as I can see, there are only a few main side effects.

1. It is an entirely new class of medication and there are no long term results. This is why it is deemed "experimental" by the FDA. By using Xolair, you are largely participating in a research group and are experimenting with your long term health. Such is the case with nearly all medications . Of particular importance is the increase (doubling) of brain cancer rates at therapeutic doses. Even though brain cancer does run in my family, I see the effects gained by Xolair to be more than a fair trade.

2. For 24 hours or so after the shot, I feel tired and hungry.

3. It is TREMENDOUSLY expensive. My copay on the shot is $470, which I can only afford with one of the financial assistance programs.

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Last edited by osmium sleeper on Tue Dec 27, 2011 9:34 pm, edited 1 time in total.

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Re: Has anyone tried Xolair?

Post by Guest » Tue Dec 27, 2011 6:45 pm

sickwithapnea17 wrote:has anyone tried xolair and found it safe and without side effects long term?
I have asthma that doesn't respond to symbicort, dulera, prednisone, my FEV1 is still stuck at 73 after over a year on symbicort
Could I be getting sick from dust mites in the carpet?
You certainly could be getting sick from dust mites. As someone else pointed out, they are everywhere. Controlling them requires diligence. If you are allergic to dust mites, you might want to research that and start taking steps to control them. Try to at least get your bedroom to be as free of mites as possible.

Good luck! It sounds like you are miserable, and you have my sympathy.