Re: restrictions on duration of Xolair treatment?

[Guest guest]

I just went off it for several months because I lost my insurance

after four years of use. It was a nightmare. I got quite ill and had

to go back on daily prednisone.

It has kicked in very quickly now that I am back on it, though, within

a day I was starting to feel better. If it is true that you can go off

it, four years is was not enough time for me.

--Kitty

>

> The last time I saw my allergist, she told me that there were new

> guidelines--I assume she meant FDA guidelines-- on duration of Xolair

> treatment. She said that the new protocol is to try to terminate

> treatment after three to five years. She said that the basis for this

> is that there's now evidence that some peoples' improvement from

> Xolair is permanent (because of their IgE returning to normal levels),

> and also that since the long-term effects of treatment are unknown,

> it's advisable to terminate after a few years. Has anyone else been

> told this?

>

> I've been on Xolair for about three and a half years, and it helps me

> quite a bit. Given how miserable I feel in the few days preceding my

> injections, I can't imagine having to go off this drug. I started

> with an IgE of over 1000; my most recent test still showed that the

> level was around 1000.

>

> My doctor wanted to " try " taking me off the drug for six months,

> despite the fact that i'm not having any known adverse reactions. I

> basically begged to keep taking it and she agreed to renew the

> prescription for another year, but said that I'd probably have to go

> off after that.

>

> Anyone else have this experience?

>

> Meryl

>

[Guest guest]

Sorry everyone...this is going to be a LONG one  full of  rambling  thoughts!!

 

 

Every patient is different, so to " categorize "  the need for Xolair like that is

a bit presumptuous.   Makes me  wonder....how many doctors out there prescribe

Xolair and  ONLY do so in regards to the FDA guidelines or on what they have

" heard " on the grapevine. How many have actually sat down and listened to a

lecture on Xolair given by  one of their Physician speakers?!  Maybe THAT should

be a requirement. If you are going to administer Xolair to patients you should

have to attend one lecture, to dis-spell any preconceived notions on Xolair.

 

 Just a few really good examples of " preconceived notions on Xolair " are:

1.) That Xolair is only good for patients with IgE levels under 700. 

Well..we've got a few people in here who have IgE levels in the thousands and it

is doing wonders for them.

 

2.)People under the age of 12 should not take Xolair.  Well..there is a study

for the  under 12 group, which is in the  final stages for approval.  It's had

even more phenomenal results than the  study for  " Adults " !!!!

 

 

 

My " Xolair Anniversary " is July 5th and I will have officially been on it for 3

years!!!! I get   2 injections every two weeks.  I self injected for about 2 out

of the 3 years.  154 shots later I feel SO much better.  I also notice that I

don't feel so great two to three days before my next injection.  My doctor did

tell me that it could be a number of things. Xolair has a half life of 26 days,

so it could be breaking  down faster in my system.  Then there is the  " female

hormonal thing " that could also be causing " problems. "  I can not imagine my

doctor telling me that I need to go off of it " that the basis for this is, that

there's now evidence that some peoples' improvement from  Xolair is permanent

.. "    Especially since   Xolair hasn't been around long enough for study  results

like that. 

 

 If I remember correctly the first " human studies " were done only 6 or 7 years

ago.  The FDA only approved it as a drug in the early summer of 2003.  There are

only like 40 thousand asthmatics taking Xolair ( yet there are about 25-30

million Americans with  Asthma!!)

 

 

Kathe

 

 

From: Meryl Cohn <mcohnlist@...>

Subject: [ ] restrictions on duration of Xolair treatment?

Date: Friday, June 27, 2008, 7:56 AM

The last time I saw my allergist, she told me that there were new

guidelines-- I assume she meant FDA guidelines-- on duration of Xolair

treatment. She said that the new protocol is to try to terminate

treatment after three to five years. She said that the basis for this

is that there's now evidence that some peoples' improvement from

Xolair is permanent (because of their IgE returning to normal levels),

and also that since the long-term effects of treatment are unknown,

it's advisable to terminate after a few years. Has anyone else been

told this?

I've been on Xolair for about three and a half years, and it helps me

quite a bit. Given how miserable I feel in the few days preceding my

injections, I can't imagine having to go off this drug. I started

with an IgE of over 1000; my most recent test still showed that the

level was around 1000.

My doctor wanted to " try " taking me off the drug for six months,

despite the fact that i'm not having any known adverse reactions. I

basically begged to keep taking it and she agreed to renew the

prescription for another year, but said that I'd probably have to go

off after that.

Anyone else have this experience?

Meryl

[Guest guest]

Hi K K:

 

I've been on Xolair five years, I get three shots every two weeks.  I have not

heard anything about tge duration of treatment.

 

Kathy

From: Meryl Cohn <mcohnlistaol (DOT) com>

Subject: [ ] restrictions on duration of Xolair treatment?

Date: Friday, June 27, 2008, 7:56 AM

The last time I saw my allergist, she told me that there were new

guidelines-- I assume she meant FDA guidelines-- on duration of Xolair

treatment. She said that the new protocol is to try to terminate

treatment after three to five years. She said that the basis for this

is that there's now evidence that some peoples' improvement from

Xolair is permanent (because of their IgE returning to normal levels),

and also that since the long-term effects of treatment are unknown,

it's advisable to terminate after a few years. Has anyone else been

told this?

I've been on Xolair for about three and a half years, and it helps me

quite a bit. Given how miserable I feel in the few days preceding my

injections, I can't imagine having to go off this drug. I started

with an IgE of over 1000; my most recent test still showed that the

level was around 1000.

My doctor wanted to " try " taking me off the drug for six months,

despite the fact that i'm not having any known adverse reactions. I

basically begged to keep taking it and she agreed to renew the

prescription for another year, but said that I'd probably have to go

off after that.

Anyone else have this experience?

Meryl

[Guest guest]

After a year and a half of being on xolair 150mg once every four weeks, the last

time I saw the allergist who monitors my xolair he changed the time in between

shots to 150mg every six weeks.  Although he didn't say, I am assuming he is

trying to see what I can benefit from but at a lesser level.  He said he didn't

want to reduce the dosage (don't think he could), but he could lengthen the time

between shots.  The first time I had to wait the extra two weeks I had some sob,

but I was still able to function at the normal level.  I just found myself using

my neb each morning and evening which seemed to work.

 

But the next time and this time I have had almost no problems and have felt

pretty well as far as the asthma goes.

 

I do plan to ask why he extended the time between doses when I go in next week

for my shot.

 

My other allergist believes that some of my breathing problems are due to acid

reflux and that if we can get that under control it will also help the asthma

and the lungs overall.  So I am on an agressive treatment for that right now.  I

have discovered that what I eat for my evening meal and how late I eat has a lot

to do with the reflux.  So I am also trying to change the way we do our evening

meal--and no more Mexican food at night.  Eating it at noon doesn't seem to

bother me, but no more enchiladas or hot sauce or any other spicy food at

night! 

 

I just wanted to mention that one of my doctors believes there is something

going on besides the allergic asthma.  But the xolair has kept me off of

prednisone and prior to xolair, I was on prednisone two, three sometimes four

times a year with a full blown upper and lower respiratory infection.....Haven't

had an infection or full blown asthma attack in two and a 1/2 years.....Thanks

to xolair as nothing else in my life style has changed.

 

 

From: Meryl Cohn <mcohnlist@...>

Subject: [ ] restrictions on duration of Xolair treatment?

Date: Friday, June 27, 2008, 6:56 AM

The last time I saw my allergist, she told me that there were new

guidelines-- I assume she meant FDA guidelines-- on duration of Xolair

treatment. She said that the new protocol is to try to terminate

treatment after three to five years. She said that the basis for this

is that there's now evidence that some peoples' improvement from

Xolair is permanent (because of their IgE returning to normal levels),

and also that since the long-term effects of treatment are unknown,

it's advisable to terminate after a few years. Has anyone else been

told this?

I've been on Xolair for about three and a half years, and it helps me

quite a bit. Given how miserable I feel in the few days preceding my

injections, I can't imagine having to go off this drug. I started

with an IgE of over 1000; my most recent test still showed that the

level was around 1000.

My doctor wanted to " try " taking me off the drug for six months,

despite the fact that i'm not having any known adverse reactions. I

basically begged to keep taking it and she agreed to renew the

prescription for another year, but said that I'd probably have to go

off after that.

Anyone else have this experience?

Meryl

[Guest guest]

I had to go off Xolair recently because BCBS denied my coverage.  I lasted 1

week before having to go on Prednisone.  If/when insurance companies catch wind

of this we are all in big trouble.

From: Meryl Cohn <mcohnlist@...>

Subject: [ ] restrictions on duration of Xolair treatment?

Date: Friday, June 27, 2008, 6:56 AM

The last time I saw my allergist, she told me that there were new

guidelines-- I assume she meant FDA guidelines-- on duration of Xolair

treatment. She said that the new protocol is to try to terminate

treatment after three to five years. She said that the basis for this

is that there's now evidence that some peoples' improvement from

Xolair is permanent (because of their IgE returning to normal levels),

and also that since the long-term effects of treatment are unknown,

it's advisable to terminate after a few years. Has anyone else been

told this?

I've been on Xolair for about three and a half years, and it helps me

quite a bit. Given how miserable I feel in the few days preceding my

injections, I can't imagine having to go off this drug. I started

with an IgE of over 1000; my most recent test still showed that the

level was around 1000.

My doctor wanted to " try " taking me off the drug for six months,

despite the fact that i'm not having any known adverse reactions. I

basically begged to keep taking it and she agreed to renew the

prescription for another year, but said that I'd probably have to go

off after that.

Anyone else have this experience?

Meryl