Re: New here - Questions about off-label use

[Guest guest]

Welcome to the group! We know all about bubble living!

Xolair has helped my horrific nasal allergy symptoms. 7 out of 10

times my asthma is triggered by sinus infections which were

triggered by severe allergic rhinitis. This leads me to believe it

could help your allergic throat.

I would talk to your doctor and ask him to contact the local Xolair

rep or call Genentech directly. I have heard of some off-label use,

but not from anyone who is actually using it off-label. Pat, our

resident Specialty Pharmacy Nurse, will hopefully post with some

additional info along these lines.

Addy

PS - I would be interested to know what unusual things you do to

help your throat. I went through a period where I gargled with

liquid benedryl....

--- In , " " <justinlouisville@...>

wrote:

>

> Hello,

> I'm new here ( referred me) and have spent all day reading

> through the back posts. What a wealth of information and

inspiration!

>

> I actually don't have asthma, but have severe uncontrolled throat

> allergies that started up 2 years ago and have basically turned my

> life upside down. I might as well be living in a bubble.

>

> I am very interested in trying Xolair to see if it helps, but I'm

> pretty sure health insurance won't cover it for off-label use

> (correct me if I'm wrong here). I've read some posts about

> Genentech's assistance program. Does anyone know if they offer

> assistance to patients who take Xolair for off-label use? Also,

do

> you happen to know what the maximum income requirement is? We are

> definitely not at poverty level, but there is no way we can afford

> $3,000 a month for this medication, especially since I haven't

been

> able to work in over a year due to these health problems.

>

> Any advice would be much appreciated!

>

> Thank you!

> , 32, Louisville

>

[Guest guest]

,

Welcome. Genentech does offer assistance programs, unfortunately not for off

label use. Some insurance companies don't ask for background records. We can

hope yours is one. If you are unable to get Xolair through your insuranc e

company, have your physician try to get you into a study if he/she feels it

would benefit you.

Pat

---------------------------------

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[Guest guest]

Hi Pat,

I was afraid that Genentech wouldn't assist patients for off-label

use. I have Cigna PPO - do you happen to know if they ask for

background records? Also, do you know of any insurance companies who

have actually covered an off-label use?

Can you give me some more information about the Xolair studies that

might apply to my situation?

Thanks so much for your help!

[Guest guest]

Hi Addy,

Thanks for your reply. I guess I'm not the only one living in a

bubble!

Do you have throat allergies, too? I have swelling sensations and

itching in my throat which causes problems swallowing and sometimes

breathing. I also get spasms in my throat which can trigger my gag

reflex. I have drastically altered my diet because my throat is so

sensitive - anything salty, acidic, or spicy hurts my throat. I had

to stop working a year ago because of this, and I rarely go out of

the house except to go to the doctor. When I do leave the house, I

wear a mask in the car. Right now I'm having a pretty bad flare, so

I'm even wearing my mask in the house and while sleeping. Ah, spring!

The only thing that gave me true relief from my throat symptoms was

60 mg of prednisone. I was only on it for 3-4 months, but I suffered

horrible side effects in that short time (extreme fatigue, muscle

atrophy, permanent joint stiffness, and my hair turned curly) and the

taper down was hellish. I also ended up with excess " flappy " skin in

my throat - probably due to the prednisone deflating my swollen

throat too quickly - which caused acute breathing problems. Because

of this, I had throat surgery in 12/04 to remove the excess skin.

I get a tiny bit of relief from antihistamines and ibuprofen. I have

also tried PPI's, Singulair, muscle relaxants, anti-anxiety drugs,

swallowed Flovent, and now I'm trying liquid Carafate to coat my

throat before eating. I will be trying Ketotifen (a mast cell

stabilizer) soon. I have been carrying Primatene Mist (epinephrine

spray) for the past 2 years in case of a throat emergency, but have

not had to use it yet. I started getting allergy shots almost a year

ago, but no improvement yet. I have considered gargling with liquid

Benadryl, but it would burn my poor throat too much!

I know there has to be something out there that will help me, and

Xolair sounds like it would be worth a try. If only it wasn't so

very expensive!

Thanks again,

[Guest guest]

Pat - I just remembered that my Rx coverage is through Express-

Scripts. I guess they would be the ones to approve coverage for Xolair

instead of Cigna.

Thanks again,

--- In , " " <justinlouisville@...>

wrote:

>

> Hi Pat,

> I was afraid that Genentech wouldn't assist patients for off-label

> use. I have Cigna PPO - do you happen to know if they ask for

> background records? Also, do you know of any insurance companies who

> have actually covered an off-label use?

>

> Can you give me some more information about the Xolair studies that

> might apply to my situation?

>

> Thanks so much for your help!

>

[Guest guest]

Thanks for the suggestions, Pat. I just don't know whether to ask my

insurance about it ahead of time, or if I should ask my doctor to try

to get pre-authorization before I mention anything to them. It's

doubtful that the insurance company will miss the fact that I don't

have asthma.

Are you aware of any studies where the medication is paid for?

Thanks,

>

>

>

> I know BCBS of California is the worst. But some BC are very

good. You have to ask pointed questions and get answers in writing.

Any ins. co can be great or awful by what riders are placed on the

policy. Again, just ask your perscpective ins. co. the questions you

want to know.

>

> Pat

[Guest guest]

Pat - who do I contact to find out about current Xolair studies?

Thanks!

> In all studies the medication is free of charge

[Guest guest]

The Genentech study I'm in sounds like the one MusicLover is in - the

medication is not free of charge and must be paid for by insurance

(Medicare in my case) or out of pocket. Like MusicLover, I'm to have

a study visit every 6 months at no charge to report on changes in my

asthma and any possible problems that turn up. It's a long-term study

to follow up on the finding in the original study of a small increase

in number of cancers in patients on Xolair compared to patients on

placebo. The difference was not statistically significant but the

Genentech study is to see if that difference still shows up in a

large number of patients over a long period of time.

Studies geared toward ultimately obtaining FDA approval for new

indications for use of Xolair would be most likely to provide the

Xolair free of charge.

>

> In all studies the medication is free of charge

>

> ---------------------------------

> Relax. virus scanning helps detect nasty viruses!

>

>

[Guest guest]

That makes sense. Somehow I doubt I'll be able to find a Xolair

study for " allergic throat " so I'd better start saving up my money!

If Xolair ever gets approved for peanut allergies, maybe I'll be able

to get insurance to cover it since I have a positive skin prick test

to peanuts. Even then, I'm not anaphylactic to it, and who knows

what the insurance requirements will be. Unless there is a

significant drop in price, I doubt insurance companies will ever

cover it for allergic rhinitis or sinusitis except in extreme cases.

I could be wrong though...

> >

> > In all studies the medication is free of charge

> >

> > ---------------------------------

> > Relax. virus scanning helps detect nasty viruses!

> >

> >