Re: U ncaring doctor and questions about getting off Xolair

[Guest guest]

After about a year and a half on 375mg of Xolair every two weeks, I

was off it for 4-5 months when I switched jobs and had to go on my

hubby's health insurance in the middle of the year, and they pulled

the pre-existing condition on me. For some reason, when I went back

on Xolair when the insurance kicked in, my pulmo prescribed only

300mg Xolair every two weeks. While my symptoms were better than pre-

Xolair, I still had a great deal of trouble. The extra 75mg every

two weeks makes a huge difference for me.

I have heard nothing but wonderful things about National Jewish. If

you can afford to go or get your insurance to cover it, go. They

were one of several places that ran the clinical trials on Xolair.

If they think you would benefit from a higher dose, you should try

it. Otherwise, go see a regular pulmo. You may have some non-

allergic triggers of your asthma that your allergist has missed.

I think we've had about three people on this board have their doctors

increase their Xolair dose. If your allergist is not even willing to

try it, definitely get another.

Addy

Group co-owner

Standard disclaimer about these being my own experiences, I'm not a

doctor, etc.

--- In , " royalashtonvp " <Oneroyal@...>

wrote:

>

> I've been on Xolair a year and a half. For the first 6 months, I

felt

> that t did help me;However,since November asthma has gotten worse.

What

> has happened when anyone on the list got off xolair?

>

> My allergist, who is uncaring, insists that I get off it but he

doesn't

> know what to do for me. I take everything except regular

prednisone. He

> suggested National Jewish or a pulmonologist. I doubt National

Jewish

> could help much, after what I've heard about it. Would a

pulmonologist

> be better than an allergist? I am definitely changing doctors

because

> thisd one is a ^ & *()_+.

>

> I take pulmicort, foradil, theophylline, volmax,

singulair,beconase,

> astelin. Since November have been on 6 rounds of steroids. Finally

> raised the theophylline, which has helped.

>

> Needless to say, this is all very depressing and I never feel very

> good. My doctor becomes angry when I talk about something that I

have

> researched or bring in some information. I asked about raising the

> Xolair and he said nobody does that. Of course, I argued with him

to no

> avail.

>

[Guest guest]

Hi,

Personally I would find a new doctor or see a pulmo, I looked up the

drugs you take as the names are different but to me it seems you are on

an awful lot of drugs that do the same things for example why do you

take Foradile and Volmax as it does the same job, then there is Beconase

and Astelin that also do the same job Theophllyne I can understand

because it gets rid of excess fluid and Singulair helps with

allergy/asthma also but I would ask a pulmo about a revision in

medication, I cant help but wonder if ultimately your being overdosed to

the point your having no reaction to the drugs your on.

Dont forget doctors are given discounts, cash and many other fly offs by

drug companies for prescribing certain drugs to their patients, its not

always in your best interest, so get a second opinion.

Hope this helps

Simone

--- In , " royalashtonvp " <Oneroyal@...>

wrote:

>

> I've been on Xolair a year and a half. For the first 6 months, I felt

> that t did help me;However,since November asthma has gotten worse.

What

> has happened when anyone on the list got off xolair?

>

> My allergist, who is uncaring, insists that I get off it but he

doesn't

> know what to do for me. I take everything except regular prednisone.

He

> suggested National Jewish or a pulmonologist. I doubt National Jewish

> could help much, after what I've heard about it. Would a

pulmonologist

> be better than an allergist? I am definitely changing doctors because

> thisd one is a ^ & *()_+.

>

> I take pulmicort, foradil, theophylline, volmax, singulair,beconase,

> astelin. Since November have been on 6 rounds of steroids. Finally

> raised the theophylline, which has helped.

>

> Needless to say, this is all very depressing and I never feel very

> good. My doctor becomes angry when I talk about something that I have

> researched or bring in some information. I asked about raising the

> Xolair and he said nobody does that. Of course, I argued with him to

no

> avail.

>

[Guest guest]

I began on 150 per month and it seemed to work for 1/2 of the month and then not

at all the following month. I felt as though I was constantly playing a game of

IgE catch up but always a step or so behind. My doctor's office called

Genentech and they suggested I do a 75mg booster 1/2 way through the month, so

150 and 75 alternating every 2 weeks. It made all the difference in the world.

Xolair comes with standardized prescribing guidelines so doctors are reluctant

to prescribe more than what is recommended. I can't say I blame them,

considering it's such a new drug. Perhaps your doctor's office will be willing

to call Genentech? Either way, I think you should go and see a pulmo for

another opinion. You shouldn't stay with the same doctor if you don't like him.

royalashtonvp <Oneroyal@...> wrote: I've been on Xolair a year and

a half. For the first 6 months, I felt

that t did help me;However,since November asthma has gotten worse. What

has happened when anyone on the list got off xolair?

My allergist, who is uncaring, insists that I get off it but he doesn't

know what to do for me. I take everything except regular prednisone. He

suggested National Jewish or a pulmonologist. I doubt National Jewish

could help much, after what I've heard about it. Would a pulmonologist

be better than an allergist? I am definitely changing doctors because

thisd one is a ^ & *()_+.

I take pulmicort, foradil, theophylline, volmax, singulair,beconase,

astelin. Since November have been on 6 rounds of steroids. Finally

raised the theophylline, which has helped.

Needless to say, this is all very depressing and I never feel very

good. My doctor becomes angry when I talk about something that I have

researched or bring in some information. I asked about raising the

Xolair and he said nobody does that. Of course, I argued with him to no

avail.

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

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[Guest guest]

I am sorry and saddened by the ordeal in which you are going through.

I do question some of the drugs you are on. Are the drugs making you sicker than

what you already are. Some, from experience sound to be very similiar.

If your dr is not willing to listen to research you have done on your own, my

suggestion is to find a new dr

Good luck, feel better. I feel for ya. You're in my thoughts

royalashtonvp <Oneroyal@...> wrote:

I've been on Xolair a year and a half. For the first 6 months, I felt

that t did help me;However,since November asthma has gotten worse. What

has happened when anyone on the list got off xolair?

My allergist, who is uncaring, insists that I get off it but he doesn't

know what to do for me. I take everything except regular prednisone. He

suggested National Jewish or a pulmonologist. I doubt National Jewish

could help much, after what I've heard about it. Would a pulmonologist

be better than an allergist? I am definitely changing doctors because

thisd one is a ^ & *()_+.

I take pulmicort, foradil, theophylline, volmax, singulair,beconase,

astelin. Since November have been on 6 rounds of steroids. Finally

raised the theophylline, which has helped.

Needless to say, this is all very depressing and I never feel very

good. My doctor becomes angry when I talk about something that I have

researched or bring in some information. I asked about raising the

Xolair and he said nobody does that. Of course, I argued with him to no

avail.

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

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[Guest guest]

Oh, goodness, I just went through something like this with a

neurologist - nothing to do w/xolair but he was the horse's rear

(except horses are beautiful and this guy was not). I finally wrote

him a letter after about 9 days. (I had called him a couple times

about a bad test experience.) I wrote the first draft, let it sit

for about 36 hours, then edited it and finally faxed it. It was

polite and genteel and approached through the attitude of a " possible

misunderstanding. " At least there's some satisfaction in voicing

your concerns but be sure it's coherent and maybe get advice from a

friend.

The other part is, I suspect the doc is kind've lazy (the one size

fits all type of healthcare) and insecure - doesn't altogether know

what he's doing. So, like others have suggested, you're probably

much better off going elsewhere.

About 3 years ago I saw an allergist who talked about Xolair. He was

also a jerk and couldn't seem to understand why I wouldn't come up

with $2,000 a month for Xolair!!!! Allergists have just never done

much for me. Last fall I finally saw a Pulmonologist who brought up

Xolair - she was a lot more pleasant and easier to deal with - and I

agreed. The insurance paid. I got started in late March.

Unfortunately, my 6 series of shots haven't worked yet (3 months) but

I recently went from 300 mgs twice a month to 375 mgs twice a month.

I dug up the old IgE of 409 from 3 years ago (my IgE last fall was

355) which convinced the pulmo I was eligible for a higher dose. So,

yes, patients do go to higher doses. I know Genentech says not to

check IgE for one year after quitting Xolair because they claim it

won't be accurate but I disagree. Mine shot up to almost 1400 on

Xolair - of course, I was sick and that probably had something to do

with it. The IgE immediately dropped down to 500 when I got better.

So, I believe there is something of significance to IgE on Xolair

despite their protestations and will stand firmly behind it.

Since Xolair did help you at first, there has got to be something

going on. It's always possible to have a disease besides allergy

based asthma. And, like the other posters, I think you're being

overdosed with too many similar medicines. They could be having a

sort've reverse effect. Whatever is going on, you need someone else

who takes you much more seriously.

--- In , " royalashtonvp " <Oneroyal@...>

wrote:

>

> I've been on Xolair a year and a half. For the first 6 months, I

felt

> that t did help me;However,since November asthma has gotten worse.

What

> has happened when anyone on the list got off xolair?

>

> My allergist, who is uncaring, insists that I get off it but he

doesn't

> know what to do for me. I take everything except regular

prednisone. He

> suggested National Jewish or a pulmonologist. I doubt National

Jewish

> could help much, after what I've heard about it. Would a

pulmonologist

> be better than an allergist? I am definitely changing doctors

because

> thisd one is a ^ & *()_+.

>

> I take pulmicort, foradil, theophylline, volmax,

singulair,beconase,

> astelin. Since November have been on 6 rounds of steroids. Finally

> raised the theophylline, which has helped.

>

> Needless to say, this is all very depressing and I never feel very

> good. My doctor becomes angry when I talk about something that I

have

> researched or bring in some information. I asked about raising the

> Xolair and he said nobody does that. Of course, I argued with him

to no

> avail.

>