Re: Re: Xolair Stats - Wonder if I'm having side effects

May 16, 2007

It took me a full year before I saw the benefits. Then my dose had to be

adjusted upward from 150 per month to 150/75 alternating every 2 weeks. I'm

glad I was patient because this medication has truly changed my life. I used to

wake up in the morning feeling completely exhausted after 10 hours of sleep.

Today I can wake up feeling refreshed on as little as 5 hours (obviously 8 is

better). I've gone from not being able to climb a flight of stairs to jogging 4

miles up and down hills pushing 2 kids in a jogging stroller in 1 hour. I hope

you see some of the benefits I have. Hang in there!

uca79iii <bme1979@...> wrote:

>

> Since I'm not showing any improvement at all after 2+ months on Xolair

> and, in fact, seem to be feeling worse in some ways (worse body aches,

> numbness and tingling in extremities, sinusitis, colds, weight gain) I

> looked up some statistics on Xolair. I found this from the Canada

> Respiratory Journal in 2006:

>

> ... in the evaluation by Bousquet et al ... , 38% of patients had a

> response by 4 weeks and 64% by 16 weeks. Fewer than two-thirds of

> patients who responded at 16 weeks had responded at four weeks; 87% had

> shown a response by 12 weeks.

>

> I do know that IgE can be accurately measured while on Xolair - that was

> in an April 2007 journal of clinical allergy and immunology. Obviously

> some people need more based on their IgE and probably other factors and

> some need less. I'm really concerned about what this is doing to me.

> It is completely unacceptable to expect anyone to blindly accept a drug

> not working for many months. I certainly would not take an aspirin for

> a headache now and be willing to wait six months for it to work. If it

> doesn't work, there's something wrong and it needs to be investigated.

> That isn't happening with Xolair. I am no little bit annoyed about it.

> Genentech only puts out the party line - they're not answering some

> serious questions.

Remember, it takes some of us up to a year or longer to see ANY

results. If you feel this strongly, rememember, you have every right

to refuse xolair treatment.

Doug

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May 16, 2007

Without knowing all of the circumstances or what knowledge people have of what

they are taking, I, for myself, cannot imagine taking any drug " blindly. " Every

drug I take I have not only read the pamphlet that comes with it, but I have

also looked it up on Internet. Any article in the newspaper I see on drugs I am

taking, I read. I work at keeping myself informed, especially when it comes to

my health and well-being.

And for the record. When my allergist suggested I be tested for xolair, he

gave me all of the information he had on xolair, and I also looked it up on

Internet. Not only that, when I went to the allergist who is actually giving me

the shots, he further instructed me in the drug, and told me it could be six

months to a year before I would see any results. His two nurses who are the

" xolair " specialists in his office have also talked to me about xolair. So when

I made the choice to start the drug, I understood the risks (yes, cancer runs in

my family, so I make sure I get my regular checkups, mammograms, ct scans and

any other tests needed on a regular basis) but believed that if it kept me off

of prednisone it would be worth it.

I have had 10 shots (one a month--150 mg.) I have gone through two bad pollen

seasons for me without a respiratory infection that usually started from

allergic rhinitis, and led to severe asthma attacks which meant at least one

round of prednisone, sometimes two. I have not had bad allergic rhinitis since

January of 06. I made it through the fall and winter and so far have made it

through this spring--heavy mold counts and lots of pollen because of the heavy

rainfalls we have had.

So, like Addy, I can't imagine someone taking anything blindly. Even though I

trust my doctor's, I still do my own research on the meds they give me. My

doctors have been very good about telling me the risks as well as the benefits

of drugs they put me on.

Just had to add my 2 cents for what it is worth.

Thanks Addy, for your post. Of course it is up to each individual and their

doctor whether or not they take a medicine--but it should be an " informed "

decision.

Adah

pyle456 <coachmac@...> wrote:

I take exception to the phrase " blindly accepting a drug not working

for months. " All of us have made the decision to take Xolair after

conversations with our doctors, families and doing our own research

and, most importantly, our own risk-benefit analysis. Further, there

are any number of drugs on the market that take weeks to months for

users to see full effect (SSRIs for one example). And there are many

drugs that have many more side effects that require patients to play

musical chairs with before they find the right one (blood pressure

medicine, for example).

I know that Doug, , and I (and many others on this

board) have been so sick and suffered so terribly in our quality of

life that we thought it well worth the wait to stay on a medicine

that had a response time as variable as Xolair's. For us it has paid

off in any number of ways. I'm not the only one who is grateful for

the success I've had on Xolair - my husband, my parents, my friends

are all grateful to have " the old Addy " back.

How many people were in the sampling of the studies you read? What I

read in the study you have reported here, most patients responded

within three months but there are some that didn't. Did it say what

percentage of those responded later? Or did they just give up.

Xolair reports an average response time of four months, but it does

take some people longer. Doug is a perfect example of this - it took

him a year and it has changed his life, dramatically decreasing the

toll that the years he's spent on prednisone has taken on his life.

You say that they can test for IgE while on Xolair. Does your

doctor have the ability to do this? Because the old IgE tests cannot

tell the difference. Does he have the newer test than can tell

this? My doctor is still unable to do this. Yes, he can test for

IgE while I " m on Xolair but the test he has doesn't distinguish

Xolair-bound from free floating IgE. If your doc doesn't have it

either, the manufacturer is probably still waiting on a patent before

making it available for sale widely (and then it may be too expensive

in the first few years for most practices to buy it, who knows?)

If you don't want to stay on Xolair any longer, go right ahead. No

one here is expecting you to " blindly " accept anything.

Addy

Group co-owner

--- In , " instdesgn1 " <instdesgn1@...>

wrote:

>

> Since I'm not showing any improvement at all after 2+ months on

Xolair

> and, in fact, seem to be feeling worse in some ways (worse body

aches,

> numbness and tingling in extremities, sinusitis, colds, weight

gain) I

> looked up some statistics on Xolair. I found this from the Canada

> Respiratory Journal in 2006:

>

> ... in the evaluation by Bousquet et al ... , 38% of patients had a

> response by 4 weeks and 64% by 16 weeks. Fewer than two-thirds of

> patients who responded at 16 weeks had responded at four weeks; 87%

had

> shown a response by 12 weeks.

>

> I do know that IgE can be accurately measured while on Xolair -

that was

> in an April 2007 journal of clinical allergy and immunology.

Obviously

> some people need more based on their IgE and probably other factors

and

> some need less. I'm really concerned about what this is doing to

me.

> It is completely unacceptable to expect anyone to blindly accept a

drug

> not working for many months. I certainly would not take an aspirin

for

> a headache now and be willing to wait six months for it to work.

If it

> doesn't work, there's something wrong and it needs to be

investigated.

> That isn't happening with Xolair. I am no little bit annoyed about

it.

> Genentech only puts out the party line - they're not answering some

> serious questions.

>

May 16, 2007

Hi :

I'm sorry your not seeding positive result, but if your not see what your

doctor says, and if it's not working come off of it.

Kathy

McLaughlin <gmclaughlin1000@...> wrote:

It took me a full year before I saw the benefits. Then my dose had to

be adjusted upward from 150 per month to 150/75 alternating every 2 weeks. I'm