Re:To GingerRe side effects

[Guest guest]

Where would we find out about long-term SE? Does anyone know how long the shots

have been in use?

I've been on them for 1 yr with some improvement in sx, but I would love to have

more information on potential SE.

Thanks,

Carol

[Guest guest]

Genentech is in the midst of a study that follows a large number of

patients for 5 years - some of us are enrolled in this study through

our allergists and pulmos. Only time will tell but I agree with

about weighing the risk of the unknown against the known substantial

risks of being on corticosteroids such as prednisone and inhaled

steroids long-term.

Fran

Where would we find out

about long-term SE? Does anyone know how long the shots have been in

use?

> I've been on them for 1 yr with some improvement in sx, but I would

love to have more information on potential SE.

> Thanks,

> Carol

>

>

[Guest guest]

I know what you mean. I've had 5 months of Xolair treatments (10

series of shots - 3 at a time) and haven't see quite the impovmnt I

wold have liked. I can now sort throgh a huge pile of dirty laundry and

not get choked up which is good but was only one piece of the disease.

My pulmo has declared my pulmonary function as " normal " yet I can't say

that I feel all that great, unlike what other folks on the message

board are declaring.

At this point I would not consider paying much for it myself (ins.

covers most) but I do continue on in the hopes that the big time break

through will occur. I've developed sensitivities to meds (not Xolair)

that weren't supposed to happen per the doc at the time. Many years

later I discovered I'm not the only one. So, bad stuff happens -

sometimes help occurs too.

Like you, I'm concerned about effects further down the line and tend to

believe that some will show up in some people. No idea who or what,

though. On the other hand perhaps one of the side effects will be help

with some other disorders. I've been a " guinea pig " in research

studies (NOT Xolair) and hope that Genentech is testing on differet

types of people over the long haul. I'm looking forward to hearing the

results.

And, despite what it might sound like, prednisone is not the only

alternative to xolair. Suggesting that one stop taking it if they're

afraid of Xoair might be a little over simplistic.

This morning I woke up w/sinus headache & congestion and irritation in

my lungs and was coughing and short of breath. That's weird, and even

more so this long on Xolair. I'm hoping that somehow they will make

progress in understanding why Xolair works when it does and why it does

not work when it doesn't. At least my pulmo believes me when I tell

her of my symptoms!

>

> Where would we find out about long-term SE? Does anyone know how

long the shots have been in use?

> I've been on them for 1 yr with some improvement in sx, but I would

love to have more information on potential SE.

> Thanks,

> Carol

>

>

[Guest guest]

Everyone had to do their own risk/benefits analysis. I, for example,

am not yet 40 and I already have osteoporosis thanks to steroids.

Others on this board have had steroid induced diabetes and other

major illnesses. I have such an improved quality of life on Xolair

that it is a no brainer for me to stay on it.

Addy

Group co-owner

Where would we find out

> about long-term SE? Does anyone know how long the shots have been

in

> use?

> > I've been on them for 1 yr with some improvement in sx, but I

would

> love to have more information on potential SE.

> > Thanks,

> > Carol

> >

> >

[Guest guest]

I have fortunately not had to be on oral steroids, but I do have a strong family

hx of cancer, and skin cancers myself, so I am a little worried. I'm glad to

hear they are doing some studies of longer than one yr, but, of course, even 5

yrs isn't much. I was taking Advair, though, and that is also a concer. Thanks

for your reply. I'm sticking with it for now.

Carol

Fran wrote:

Genentech is in the midst of a study that follows a large number of

patients for 5 years - some of us are enrolled in this study through

our allergists and pulmos. Only time will tell but I agree with

about weighing the risk of the unknown against the known substantial

risks of being on corticosteroids such as prednisone and inhaled

steroids long-term.

[Guest guest]

My doc also ordered blood tests the first time I came in after

starting Xolair - think it was at around 1 months - can't remember

for sure. I was a little surprised that she ordered liver function

tests, then read something afterward about Xolair and the liver -

breaking it down in the liver or something. I think that's pretty

common w/a lot of meds (isn't it?) Someone more knowledgable plese

correct me. I don't remember anything about cholesterol but maybe it

has to do with liver metabolism. She also ordered cbc which is

pretty routine. The last time I saw her (at about 4 months) she only

ordered pft - no blood work.

Probably it's a good idea to look for diseases that just plain go

along w/asthma as well as side effects of previous or co-treatments.

I'm assuming that's what your doc is doing but would welcome hearing

how it all came out for you. Of course it's always a good idea to

keep an eye out for diseases that turn up in family history.

Is there an official (or recommended) policy re tests to run while on

Xolair?

Actually, the " side effect " I'm (and my pulmo too) longing for (!!!)

is an overall reduction of inflammation in several parts of my body.

I know that's not the official use (I had IgE of 409) but have heard

of some folks having other (non asthma) improvements and want to be

one of them! My doc thought it might help in other areas too

although she did not in any way say it would happen. Just

a " Christmas wish list. "

By-the-way, does anyone have an actually DRAMATIC improvement? i.e.,

suddenly wake up and feel marvelous? My improvement has been gradual

and not all that dramatic. Still in the early stages, though.

Where would we find out

> about long-term SE? Does anyone know how long the shots have been

in

> use?

> > I've been on them for 1 yr with some improvement in sx, but I

would

> love to have more information on potential SE.

> > Thanks,

> > Carol

> >

> >

[Guest guest]

No, no extra blood work. The only testing is a pulmonary function

test yearly. As I understand it, the primary purpose of the study is

to hopefully show that there is no increased risk of cancer from

Xolair.

Only your doc can interpret your blood tests and if you feel he's not

informing you completely, ask for copies for your own records and ask

him about any abnormal results you see. You should also ask him why

he's repeating any labs you've had recently. Unfortunately, some docs

are not very forthcoming with details unless they are asked directly

and specifically. It is every patient's right to know EVERYTHING

about his or her medical care at every point along the way. If you

don't understand something, it is your right to ask and your doctor's

responsibility to answer. There is no such thing as a stupid question!

In general, results just outside the normal range are not considered

worrisome but will usually be repeated at another time to be certain.

There are, of course, exceptions to this general approach.

Electrolytes are simply sodium, potassium, chloride and bicarbonate.

Often glucose (blood sugar) and kidney function (BUN and creatinine)

are also check in the same blood sample.

Fran

Where would we find out

> about long-term SE? Does anyone know how long the shots have been

in

> use?

> > I've been on them for 1 yr with some improvement in sx, but I

would

> love to have more information on potential SE.

> > Thanks,

> > Carol

> >

> >

[Guest guest]

<<By-the-way, does anyone have an actually DRAMATIC improvement? i.e.,

suddenly wake up and feel marvelous? My improvement has been gradual

and not all that dramatic. Still in the early stages, though.>>

Unfortunately, my improvement took over a year. I also wanted it to

work faster. I almost quit after 6 months but my doctor advised me to

stay the course. I am SO glad I did now.

Doug

Group founder