Re: Question - Has anyone had a stroke while on Xolair?

January 31, 2009

My daughter has not had a stroke, *BUT SHE HAS BEEN SUFFERING SEVERE

NEUROLOGICAL SYMPTOMS SINCE 12 HOURS AFTER HER DECEMBER XOLAIR INJECTIONS.*

Just as you had previously had a stroke, my 14 yr old daughter has suffered

petit mal type seizures, migraines, and chronic daily nerve pain for several

years. These conditions were being somewhat controlled with medications. She

began Xolair in Fall 2007, and by Spring 2008, her neurologic issues had

virtually subsided completely. The doctors could not understand the

connection, but we accepted it thankfully. She had her monthly Xolair

injections in early Dec 2008, and within 12 hours, a downward spiral of

serious neurologic issues began. She was extremely dizzy the morning after

injections, and she fell in the bathroom (did not hit her head.) She

subsequently forgot having been at school taking a test that morning. The

next day, as memory issues were becoming more pronouced, she stood in the

hallway of our home explaining these episodes to me. She collapsed into my

arms in complete fear after a moment of not recognizing me or her location.

Severe mood swings ensued, and eventually, hallucinations set in.

She had a video eeg that was normal. We were referred for a psychiatric eval

by her neurologist. He reviewed her records and said the symptoms were

medical, not psychiatric (and he is one of the BEST psychiatrists in the

country/has a very highly respected psychiatric practice. He has authored or

co-authored 80 books, and he is noted as saying, " ANY medication can cause

ANY symptom in ANY person or ANY organ at ANY time. " ) Even her peidatrician

has commented that Xolair is considered a " space age " drug; there is so

little known about it currently.

My daughter's immunologist originally believed the symptoms were a reaction

to xolair. He later retracted that, REFUSING to give ANY information to her

specialist about what is even in the compound that makes xolair. He became

VERY defensive, insisting that her symptoms had nothing to do

with Xolair. If a Xolair patient has any reaction to injections, doctors

must report these. When I filed a complaint against her immunologist, I was

informed that by denying the connection between Xolair and symptoms, NO

report is necessary.

I explained to her immunologist that nobody was saying that Xolair

necessarily caused the neurologic issues my daughter suffered. The concern

was that her Dec 2008 injection triggered a neurologic response that she may

have already had a pre-disposition to having.

Her doctor has since ordered a series of tests and plans to start her on new

meds once we have an additional 24-hr eeg. He feels that in light of the

symptoms and the timing in relation to Xolair, we will need to stop

injections. He called and spoke with her immunologist. Her

immunologist REFUSED to take her off Xolair. He actually called me a liar (I

heard it in the background) .... in the sentence after refusing to give her

doctor the compound for Xolair.

You are welcome to contact me further about these issues. There seem to be

some clear indicators that point to more than a coincidence in the

neurologic issues you are both dealing.

<><

On Fri, Jan 30, 2009 at 4:45 PM, arbarj2 <arbarj2@...> wrote:

> On 9/17/07 I had a stroke that affected only my eyesight. I am

> somewhat recovered from the stroke with some residual side effects.

> I still am missing some of the vision in both eyes. I was put on

> coumadin (blood thinners) after this stroke and continue the

> medication still today.

>

> During a routine eye exam with a visual field test in December, 2008,

> I was informed that I had another stroke. To confirm the stoke, I

> had additional visual field tests with a neuro-optomalogist.

>

> The doctors are not sure why I had an additional stroke, but I am

> starting to investigate any and all medications that I am taking for

> other side effects maybe not published, but incidences are happening.

>

> I would appreciate hearing from others regarding stroke victims who

> use Xolair.

>

> Thanks

>

--

<><

January 31, 2009

Both of you need to make sure that at least one of your doctors has

contacted the Xolair folks and reported these occurrences. I would

also go to the genentech website and try to talk to someone directly -

but find out if your case was reported first so you can confirm

that when you call and you don't become a double or triple report by

accident - that's not any more helpful than not being reported at all.

, in the case of your daughter, she has sufficient previous

medical issues that it is possible that for her it is an issue of

Xolair in combination with something that is

unusual/imperfect/different/mutant/whatever in one of her systems.

But who knows. The psychiatrist is right - ANY medicine can cause

ANYONE to have an reaction at ANY time. The immunologist who refused

to release that information should be shot.

I have not heard of any other stroke-related issues and Xolair, but

that doesn't necessarily mean anything. If either of you (and

, in this case " You " means your daughter) have any kind of

meaningful history of taking steroids for asthma or any other serious

illness, I would examine that as well, since that has so many known,

serious side effects.

If Xolair begins to be found to be a more risky choice for those

predisposed to stroke, then that would be problematic: repeated

serious asthma episodes themselves can put more work on the heart to

move blood and get oxygen around when the lungs are not doing it

themselves, and repeated rounds of prednisone are also risky. I

already have prednisone induced high blood pressure AND osteoporosis

and I'm only 41. (Have I mentioned the bone loss in my teeth to this

group yet?)

Of the couple of hundred people who've posted (and I'm guessing at

the number) over the past five years, you two are among maybe seven

or eight who've reported serious medical activity that may or may not

be related to Xolair. It's a reminder that all of us need to talk

with our doctors at our annual check ups and ask if there is any new

information we need to be aware of - about Xolair AND all of our

other medications. I have one doctor that won't let me take the

generic of one of my meds b/c she says potential for risk in a couple

of areas is actually greater with the generic than the prescription.

So I pay $40 more a month to be slightly safer.

Go figure.

TAke care, all of you,

Addy

Group co-owner

>

> > On 9/17/07 I had a stroke that affected only my eyesight. I am

> > somewhat recovered from the stroke with some residual side

effects.

> > I still am missing some of the vision in both eyes. I was put on

> > coumadin (blood thinners) after this stroke and continue the

> > medication still today.

> >

> > During a routine eye exam with a visual field test in December,

2008,

> > I was informed that I had another stroke. To confirm the stoke, I

> > had additional visual field tests with a neuro-optomalogist.

> >

> > The doctors are not sure why I had an additional stroke, but I am

> > starting to investigate any and all medications that I am taking

for

> > other side effects maybe not published, but incidences are

happening.

> >

> > I would appreciate hearing from others regarding stroke victims

who

> > use Xolair.

> >

> > Thanks

> >

>

> --

> <><

>

February 1, 2009

That is certainly disturbing and even more so when you're caught

between the significant health benefits of the drug yet finding even

more serious issues that seem to go with the treatment. The doctor

in mean denial sounded a bit familiar - the very person who is there

to provide health care is the one who is turning against the

patient.

I did a brief search and found another message board that also

describes a serious neurological reaction to Xolar on MSN -

http://groups.msn.com/asthmasupportgroups/general.msnw?

action=get_message & mview=0 & ID_Message=3136

I don't know if this is your post or a completley different person.

I also came across this website listing side effects including

myasthenia gravis - Xolair Side Effects Report #5614096-2

Physician from UNITED STATES reported XOLAIR problem on Jan 29,

2008. http://patientsville.com/medication/xolair_side_effects.htm

What I found most interesting for myself was on the same website but

under " Xolar Self Reported Side Effects that included spacey,

confusion, anxiety. The spaciness and confusion albeit very brief

did happen to me several times immediately after Xolair inj. I could

tell something was happening to me but certainly not anything like

the usual reports of anaphylaxsis so although I reported it to the

doc nothing happened and I cheerfully went on. I kind've think that

docs & maybe the manufacturer maybe know some of these things happen

in some patients but it's just not being published yet.

This is another message board where a patient's physician believed

her severe headaches were associated with Xolair:

http://www.medhelp.org/posts/show/617155

As for myself, my headaches improved tremendously on Xolair (took 8

months though) but my body pain (arthritis at least in part)

definitely increased, my blood pressure went even higher, I had a

bladder infection for the first time in many years, and an abnormal

mammogram. Probably the mamogram was unrelated - not sure about the

bladder infection although that could have been unrelated too. The

body pain has been known to increase with Xolair and I tend to

believe it was a contributor. Also, upper respiratory infections are

listed as side effects and I had a lot of those. It might have been

coincidental since I was not the picture of health pre Xolair -

that's why I took it.

I've been off Xolair 7 months, have somewhat less body pain, but

asthma is a daily problem - constant tightness and shortness of

breath. I'll be glad when there's something out there that I can

reasonably take.

>

> > On 9/17/07 I had a stroke that affected only my eyesight. I am

> > somewhat recovered from the stroke with some residual side

effects.

> > I still am missing some of the vision in both eyes. I was put on

> > coumadin (blood thinners) after this stroke and continue the

> > medication still today.

> >

> > During a routine eye exam with a visual field test in December,

2008,

> > I was informed that I had another stroke. To confirm the stoke, I

> > had additional visual field tests with a neuro-optomalogist.

> >

> > The doctors are not sure why I had an additional stroke, but I am

> > starting to investigate any and all medications that I am taking

for

> > other side effects maybe not published, but incidences are

happening.

> >

> > I would appreciate hearing from others regarding stroke victims

who

> > use Xolair.

> >

> > Thanks

> >

>

> --

> <><

>

February 1, 2009

I have found all of these symptoms as reported side effects of

prednisone use. Because the population of folks who qualify for

Xolair are generally steroid-dependent, it causes me to wonder if many

of the side effects reported with Xolair use are coincidental to

steroid use and/or to decreasing steroid intake once Xolair starts

working for some patients. Also, effects of long-term prednisone

usage have been known to show up after one is off prednisone.

I'm not saying Xolair isn't the cause of these side effects in any

individual patient, I'm just thinking of the old metaphor - " If you

hear hoofbeats, think horses not zebras. "

I had headaches a couple of times after my Xolair dosage when I was

first starting, but none since. Prior to Xolair I had severe sinus

headaches almost every day; now I have them maybe 3 times a month

(more if we have a lot of weather changes, something Xolair can't fix).

Just food for thought, along with another reminder to report any

possible side effects of any medication to your doctor.

Addy

Group co-owner

> >

> > > On 9/17/07 I had a stroke that affected only my eyesight. I am

> > > somewhat recovered from the stroke with some residual side

> effects.

> > > I still am missing some of the vision in both eyes. I was put on

> > > coumadin (blood thinners) after this stroke and continue the

> > > medication still today.

> > >

> > > During a routine eye exam with a visual field test in December,

> 2008,

> > > I was informed that I had another stroke. To confirm the stoke, I

> > > had additional visual field tests with a neuro-optomalogist.

> > >

> > > The doctors are not sure why I had an additional stroke, but I am

> > > starting to investigate any and all medications that I am taking

> for

> > > other side effects maybe not published, but incidences are

> happening.

> > >

> > > I would appreciate hearing from others regarding stroke victims

> who

> > > use Xolair.

> > >

> > > Thanks

> > >

> >

> > --

> > <><

> >

February 1, 2009

Thank you so much for the information! I am gathering data to share with her

doctors this next week. I alwo plan to contact Genetech to discuss and

report this!

God Bless, and again, thank you so much for the information!

<><

On Sun, Feb 1, 2009 at 1:38 AM, instdesgn1 <instdesgn1@...> wrote:

> That is certainly disturbing and even more so when you're caught

> between the significant health benefits of the drug yet finding even

> more serious issues that seem to go with the treatment. The doctor

> in mean denial sounded a bit familiar - the very person who is there

> to provide health care is the one who is turning against the

> patient.

>

> I did a brief search and found another message board that also

> describes a serious neurological reaction to Xolar on MSN -

> http://groups.msn.com/asthmasupportgroups/general.msnw?

> action=get_message & mview=0 & ID_Message=3136

>

> I don't know if this is your post or a completley different person.

> I also came across this website listing side effects including

> myasthenia gravis - Xolair Side Effects Report #5614096-2

> Physician from UNITED STATES reported XOLAIR problem on Jan 29,

> 2008. http://patientsville.com/medication/xolair_side_effects.htm

>

> What I found most interesting for myself was on the same website but

> under " Xolar Self Reported Side Effects that included spacey,

> confusion, anxiety. The spaciness and confusion albeit very brief

> did happen to me several times immediately after Xolair inj. I could

> tell something was happening to me but certainly not anything like

> the usual reports of anaphylaxsis so although I reported it to the

> doc nothing happened and I cheerfully went on. I kind've think that

> docs & maybe the manufacturer maybe know some of these things happen

> in some patients but it's just not being published yet.

>

> This is another message board where a patient's physician believed

> her severe headaches were associated with Xolair:

> http://www.medhelp.org/posts/show/617155

>

> As for myself, my headaches improved tremendously on Xolair (took 8

> months though) but my body pain (arthritis at least in part)

> definitely increased, my blood pressure went even higher, I had a

> bladder infection for the first time in many years, and an abnormal

> mammogram. Probably the mamogram was unrelated - not sure about the

> bladder infection although that could have been unrelated too. The

> body pain has been known to increase with Xolair and I tend to

> believe it was a contributor. Also, upper respiratory infections are

> listed as side effects and I had a lot of those. It might have been

> coincidental since I was not the picture of health pre Xolair -

> that's why I took it.

>

> I've been off Xolair 7 months, have somewhat less body pain, but

> asthma is a daily problem - constant tightness and shortness of

> breath. I'll be glad when there's something out there that I can

> reasonably take.

>

> >

> > > On 9/17/07 I had a stroke that affected only my eyesight. I am

> > > somewhat recovered from the stroke with some residual side

> effects.

> > > I still am missing some of the vision in both eyes. I was put on

> > > coumadin (blood thinners) after this stroke and continue the

> > > medication still today.

> > >

> > > During a routine eye exam with a visual field test in December,

> 2008,

> > > I was informed that I had another stroke. To confirm the stoke, I

> > > had additional visual field tests with a neuro-optomalogist.

> > >

> > > The doctors are not sure why I had an additional stroke, but I am

> > > starting to investigate any and all medications that I am taking

> for

> > > other side effects maybe not published, but incidences are

> happening.

> > >

> > > I would appreciate hearing from others regarding stroke victims

> who

> > > use Xolair.

> > >

> > > Thanks

> > >

> >

> > --

> > <><

> >

February 1, 2009

,

Please let us know what you find out. We are all hoping for the best

for your daughter!

Addy

Group co-owner

> > >

> > > > On 9/17/07 I had a stroke that affected only my eyesight. I am

> > > > somewhat recovered from the stroke with some residual side

> > effects.

> > > > I still am missing some of the vision in both eyes. I was put on

> > > > coumadin (blood thinners) after this stroke and continue the

> > > > medication still today.

> > > >

> > > > During a routine eye exam with a visual field test in December,

> > 2008,

> > > > I was informed that I had another stroke. To confirm the stoke, I

> > > > had additional visual field tests with a neuro-optomalogist.

> > > >

> > > > The doctors are not sure why I had an additional stroke, but I am

> > > > starting to investigate any and all medications that I am taking

> > for

> > > > other side effects maybe not published, but incidences are

> > happening.

> > > >

> > > > I would appreciate hearing from others regarding stroke victims

> > who

> > > > use Xolair.

> > > >

> > > > Thanks

> > > >

> > >

> > > --

> > > <><

> > >

February 1, 2009

I was not pred dependent before or when I went on Xolair. I was,

however, and still am (unfortunately never could get away from it)

Advair 500/50 dependent. I did, a few times a year (maybe 3 or 4?)

do a brief taper of 4 days of another steroid usually in association

w/getting over flu. That's not enough to cause long term effects

although 6-7 (?) years ago before Advair was invented I was on

steroids more. Even then it was not continuous.

My husband claimed I had minor memory problems while on Xolair ...

I'm not totally sure. And, having an upper respiratory infection for

3 months just does my mental and cognitive process a real number

downward.

> > >

> > > > On 9/17/07 I had a stroke that affected only my eyesight. I

am

> > > > somewhat recovered from the stroke with some residual side

> > effects.

> > > > I still am missing some of the vision in both eyes. I was put

on

> > > > coumadin (blood thinners) after this stroke and continue the

> > > > medication still today.

> > > >

> > > > During a routine eye exam with a visual field test in

December,

> > 2008,

> > > > I was informed that I had another stroke. To confirm the

stoke, I

> > > > had additional visual field tests with a neuro-optomalogist.

> > > >

> > > > The doctors are not sure why I had an additional stroke, but

I am

> > > > starting to investigate any and all medications that I am

taking

> > for

> > > > other side effects maybe not published, but incidences are

> > happening.

> > > >

> > > > I would appreciate hearing from others regarding stroke

victims

> > who

> > > > use Xolair.

> > > >

> > > > Thanks

> > > >

> > >

> > > --

> > > <><

> > >

February 4, 2009

Addy:

I understand that steroids has many side effects, but for the last 4 yrs. I have

not taken steroids for my asthma.

Since I started Xolair, I have had a wonderful response to the medication after

6 weeks of injections. I receive injections every two weeks because of my high

IGE.

I called Genetech and spoke to the medical department as well as Novartis

concerning my concern with the possibiity of strokes being caused by Xolair.

They, of course, said that there is nothing published regarding this specific

side effect. That is not to say it doesn't exist.

This is the reason I was asking the groups input to see if there were any other

group members who have suffered any other neurological problems using Xolair.

Barbara

February 5, 2009

Barbara,

Thanks for the clarification. Please keep us posted on how you are

doing and what you continue to find out through your own doctor.

Addy

>

> Addy:

>

> I understand that steroids has many side effects, but for the last 4

yrs. I have not taken steroids for my asthma.

>

> Since I started Xolair, I have had a wonderful response to the

medication after 6 weeks of injections. I receive injections every

two weeks because of my high IGE.

>

> I called Genetech and spoke to the medical department as well as

Novartis concerning my concern with the possibiity of strokes being

caused by Xolair.

>

> They, of course, said that there is nothing published regarding this

specific side effect. That is not to say it doesn't exist.

>

> This is the reason I was asking the groups input to see if there

were any other group members who have suffered any other neurological

problems using Xolair.

>

> Barbara

>

February 8, 2009

well i find that everyone on here is just fine and dandy now that xolair entered

their lives...no one responded to my fluctuating ige levels question...is

everyone fine and dandy...no more asthma or allergies etc? be real....

> From: Karin Melvin <nnmfamrochester (DOT) rr.com>

> Subject: Re: [ ] Re: Question - Has anyone had a stroke while on

Xolair?

>

> Date: Saturday, February 7, 2009, 12:51 PM

> I am sad to say I want to be removed from this group. I

> thought it was for support for people on xolair. I was put

> down when I had a severe reaction and have seen anyone else

> with any troubles put down. I am off to go start group where

> people can ask anything and get support. By the way Adah how

> much money are you getting from Genetic to push xolair?

> ----- Original Message -----

> From: Derybj

>

> Sent: Wednesday, February 04, 2009 6:22 PM

> Subject: [ ] Re: Question - Has anyone had a

> stroke while on Xolair?

>

> Addy:

>

> I understand that steroids has many side effects, but for

> the last 4 yrs. I have not taken steroids for my asthma.

>

> Since I started Xolair, I have had a wonderful response

> to the medication after 6 weeks of injections. I receive

> injections every two weeks because of my high IGE.

>

> I called Genetech and spoke to the medical department as

> well as Novartis concerning my concern with the possibiity

> of strokes being caused by Xolair.

>

> They, of course, said that there is nothing published

> regarding this specific side effect. That i

February 8, 2009

Neither of my doctors are monitoring my ige levels so I can't speak to that.

While xolair has helped tremendously in that I have not had to be on prednisone,

if I have given the impression that I have no sob, I apologize for giving that

impression. I do still have some asthma symptoms from time to time and I am

still on all the meds I was on previous to xolair, except prednisone. I think

from time to time I have mentioned that some of my asthma is not due to

allergies, so I will never be totally free from asthma, but my symptoms are not

as severe as they were before xolair. For some people who have only allergic

asthma, it probably has been a tremendous help to them.

What I have to remember is that my chemical make-up is different from everyone

else's and I will respond differently to different triggers and mediciines.

> From: Karin Melvin <nnmfamrochester (DOT) rr.com>

> Subject: Re: [ ] Re: Question - Has anyone had a stroke while on

Xolair?

>

> Date: Saturday, February 7, 2009, 12:51 PM

> I am sad to say I want to be removed from this group. I

> thought it was for support for people on xolair. I was put

> down when I had a severe reaction and have seen anyone else

> with any troubles put down. I am off to go start group where

> people can ask anything and get support. By the way Adah how

> much money are you getting from Genetic to push xolair?

> ----- Original Message -----

> From: Derybj

>

> Sent: Wednesday, February 04, 2009 6:22 PM

> Subject: [ ] Re: Question - Has anyone had a

> stroke while on Xolair?

>

> Addy:

>

> I understand that steroids has many side effects, but for

> the last 4 yrs. I have not taken steroids for my asthma.

>

> Since I started Xolair, I have had a wonderful response

> to the medication after 6 weeks of injections. I receive

> injections every two weeks because of my high IGE.

>

> I called Genetech and spoke to the medical department as

> well as Novartis concerning my concern with the possibiity

> of strokes being caused by Xolair.

>

> They, of course, said that there is nothing published

> regarding this specific side effect. That i

February 8, 2009

>

> Neither of my doctors are monitoring my ige levels so I can't speak

to that. While xolair has helped tremendously in that I have not had

to be on prednisone, if I have given the impression that I have no

sob, I apologize for giving that impression. I do still have some

asthma symptoms from time to time and I am still on all the meds I was

on previous to xolair, except prednisone. I think from time to time I

have mentioned that some of my asthma is not due to allergies, so I

will never be totally free from asthma, but my symptoms are not as

severe as they were before xolair. For some people who have only

allergic asthma, it probably has been a tremendous help to them.

>

> What I have to remember is that my chemical make-up is different

from everyone else's and I will respond differently to different

triggers and mediciines.

I try to always have positive posts. I always look for the good in

everything.

I am doing great on xolair but it has NOT cured me from asthma. I

still have to neb 3x a day (canister inhalers don't work for me for

some reason) and I am still on Advair.

I am NOT on Prednisone anymore THANK GOD! Pre-Xolair, I was on 40 mg a

day and my body was being torn apart by it. UGH!

I am fortunate not to have the problems some in the group have had

like reactions and shots mixed and given improperly, insurance etc...

I have never given any thought to my IGE level since I got those

results in 2003. All I know is they were quite high then. My asthma

is under control so I really don't care what it is now.

God bless you my friends and happy breathing

Doug

Group founder

February 8, 2009

Doug, you said it much better than I could. I, too, thank God for the

improvements and not having to be on prednisone.

From: uca79iii <uca79iii@...>

Subject: [ ] Re: Question - Has anyone had a stroke while on Xolair?

Date: Sunday, February 8, 2009, 1:07 PM