Re: Re:To GingerRe side effects

[Guest guest]

To the best of my knowledge, the shot has only been available since 2003. I've

been on it since 2004. The long-term side effects are not yet known because the

medication hasn't been on the market long enough. Like Doug has mentioned, the

long-term side effects of Pred are known and they are nothing short of

diasterous. If Xolair gets you off Pred then the risk/benefit seems to be in

the favor of the benefit.

Carol Corley <mybouvs@...> wrote: 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]

Hi Carol

I have been on the highest dose of Xolair since January 2001. I was the

first person on a hospital trial to be injected. I have no side effects and

have had no admissions. I t has really knocked my allergies in the head.

It’s a fantastic medication and I hope it becomes more accessible to others.

Regards

Sally

_____

From: [mailto: ] On

Behalf Of Carol Corley

Sent: 13 August 2007 23:17

Subject: [ ] Re:To GingerRe side effects

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]

For those of you who are in on the study for long term side effects of xolair,

do you have blood work done on a regular basis? I am wondering because my

Internist has started watching my blood tests a little more carefully and he is

ordering them a little more often. Of course I was extremely anemic about six

years ago and he has watched my blood counts for that and even though my

cholesterol has always been low, he claims it could go high and bears watching.

While I have not gained any weight with xolair (in the year I've been on it), I

have not lost any either, but have not really tried hard on a consistent basis.

Just curious. My doc ordered blood work for me today and I had it done just

three months ago. But he ordered two additional tests (electrolytes?????or

something like that) and one other test I hadn't heard of. Makes me wonder if

he told me about everything my last tests showed. There were two tests on the

results that were barely outside the range, but he didn't say anything about

either of them.

Would the company be looking for any kind of side effect? Like the aching, or

maybe the cancer (if it is in the family background), or what else? Just

curious.

Adah

Guess I'll find out in a week or so!.

Take care all........

Adah

tiredofsteroids <sitesee@...> 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.

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]

Thank you for your response.

My improvement has been gradual over the year I have been taking xolair. It

has not been " dramatic " --waking up one morning and suddenly feeling like I

could take on the world. But I've noticed little things I can do now that even

three or four years ago I just couldn't and wouldn't do--like sitting on the

deck yesterday evening while my husband finished mowing the grass--even two

years ago fresh cut grass would make my chest feel tight and my pipes tighten up

immediately. But I didn't even use my inhaler! I'm not sure I've read of any

overnight improvement mentioned by anyone. It seems to take a while to work but

in retrospect it does work! I have been able to do things outside without

huffing and puffing and depending on my inhaler, so I know it is helping!

Hope it helps you in other areas.

Adah

instdesgn1 <instdesgn1@...> wrote:

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]

Thanks, Fran. It is so great to have you on this list.

My doctor is one I can and will ask about the test. I didn't think too much

about the blood work until after I left and then I began to wonder why he had

done it again so quickly. I did get a copy of the blood work and will get a

copy of this one he just did. I never hesitate to ask him, I was just curious

about those of you who are in the side effect study.

I'll let you know if anything unusual shows up.

Adah

tiredofsteroids <sitesee@...> wrote:

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

> >

> >