Re: Ototoxicity

[Guest guest]

,

Not only that. We should push for a ban on TV drug ads because they

only serve to push people into a mindset. " Doctor, I heard about drug Z and

I want you to prescribe it for me. " And I can only imagine how much money

flows between the drug companies and doctors.

*---* *---* *---* *---* *---*

Everyone seems normal until you get to know them.

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

sean

i am not supporting or promoting any drug or drug use but mycin drugs do

serve a well needed purpose and these drugs do not cause hearing loss in

everyone why some react and some don't is still being researched

but some babies react to immunization shots but

no one thinks this should be banned if my son is stung by a bee he

could die but my daughter doesn't even feel the sting one of the

risk of many many drugs is diarrhea which most people don't bat an eye at but

for one of my daughters this could mean a trip to the ER

believe me i do know the side effects or reaction to medications ...

a good number in fact

i was of the very rare people who lost all hearing overnight due to

mycin drugs but at the time i wasn't in great shape and very close to

dying so mycin drugs were the only alternatives even this fact

didn't

make it easier to adjust to no sounds but these are facts kinda

like facts of life

susan

[Guest guest]

Me again,

I read my post and saw that I said had been on Xolair. I am still on it,

17weeks ago I started the shots.

Please excuse the oops.

( Geesiskwe)

[Guest guest]

From my understanding of the mechanisms of action for Xolair, it is

unlikely that it would cause anyone to lose hearing. Chronic

inflammation, obstruction, and other sinus/allergy components would

be more likely to cause such a result. But it's still early....

Off-label use refers to the use of a drug for something other than

what the FDA and manufacturers recommend/approve it to be used for.

Off-label use of any drug is not uncommon in research hospitals where

docs are trying to find things that work for patients who do not

respond to normal treatment options.

For example: Xolair is currently only approved for allergic asthma.

Anyone who has severe allergic throat reactions whose doctor

prescribed Xolair would be using it " off-label. "

Take care all,

Addy

>

> Hi,

>

> I have been out of the loop even though I had just joined a couple

> of months ago. I lost the hearing in my left ear April 13, 2006. I

> started Xolair Feb 7, 2006. The doctors don't know what caused it

> and one ENT said he wondered if it was the Xolair the Asmtha

> specialist had me on. I have tinnitus ( noise in the ear. I said I

> hadn't seen that as a side effect. I also have fatique.

>

> I have also been taking Singular which when I was on a taper of

> Prednesone the docs didn't say anything about the PDR warning that

> Swelling could occur during a taper from steroids! Boy did my face

> swell for days. I looked that up myself. I am back on it now,

> Michigan pollen count is really bad this time of year and the

Xolair

> wasn't working well yet. I wonder if the Singular caused the

hearing

> loss but the PDR doesn't show that as a side effect either.

>

> Also, would someone tell me what the off lable use is for Xolair. I

> missed something.

>

> Oh, my IGE is 1274. I see that is quite high.

>

> Thanks folks,

>

>

>

[Guest guest]

Addy, thank you for your response. I am currently waiting for the form that

Genitec is sending to my local pharmacist to document the hearing loss. They

are also looking worldwide for any other cases of hearing loss.

This looks to me like ototoxicity is a possibility if they are looking

deeper into it. My pharmacist agrees. I am stopping treatment until I hear

more.

The pharmacist also contacted the company that make Singular, they have not

had any reports of deafness.

We are dealing with a genetic type drug from what I understand. It takes a

year to test ones IGE again to get a normal read. This sounds like it really

changes the bodies system dramatically.

I was hesitant to write because I don't want to discourage people that are

getting helped by this. Just like the Salmeteral in Advair and Serevent

there is a small number of people that cannot do that drug either because it

exacerbates the asthma symptoms. The Xolair may have had the same negative

affect on me. I am not sure ofwhat to do but I don't want to risk having

hearing loss in the other ear so for now I have stopped the refill.

I will let you all know what or if I find out anything more.

A good thing came out of this. I had a Brain and IOC MRI for the hearing

loss and it was discovered that I had had two mini strokes in the past year

since the last MRI due to the Meningitis. The neurologist is doing further

tests. I never even knew!

In Hope of Healing,

[Guest guest]

The reason one has to wait six months or more after stopping xolair

in order to get a true reading of IgE level is that the lab tests

currently on the market cannot distinguish between IgE that is bound

to Xolair and IgE that is not bound at all. Genentech has a test

that can distinguish bound IgE from " unbound, " but it is so expensive

and high-tech that it cannot be replicated in a normal lab

environment as yet. It is the limitations of the testing mechanism

that require the delay, not the Xolair itself or its mechanism of

action.

Xolair is designed ONLY to bind to IgE, an immunoglobulin typically

found in very small quantities in most people but found in very large

quantities in those of us who are severely allergic. While there is

a small possibility that your own cellular makeup may be such that it

has caused Xolair to do something else that has resulted in your

hearing loss, it is still unlikely and, even if the Xolair has caused

your hearing loss, you will probably be in a half-percent of patients

(if that many) to experience hearing loss as a side effect.

That said, I hope that you are able to find out the true cause of

your hearing loss, regardless of whether or not it is Xolair, and

that you are able to get your hearing back soon! Please keep us

posted.

>

> Addy, thank you for your response. I am currently waiting for the

form that

> Genitec is sending to my local pharmacist to document the hearing

loss. They

> are also looking worldwide for any other cases of hearing loss.

> This looks to me like ototoxicity is a possibility if they are

looking

> deeper into it. My pharmacist agrees. I am stopping treatment until

I hear

> more.

>

> The pharmacist also contacted the company that make Singular, they

have not

> had any reports of deafness.

>

> We are dealing with a genetic type drug from what I understand. It

takes a

> year to test ones IGE again to get a normal read. This sounds like

it really

> changes the bodies system dramatically.

>

> I was hesitant to write because I don't want to discourage people

that are

> getting helped by this. Just like the Salmeteral in Advair and

Serevent

> there is a small number of people that cannot do that drug either

because it

> exacerbates the asthma symptoms. The Xolair may have had the same

negative

> affect on me. I am not sure ofwhat to do but I don't want to risk

having

> hearing loss in the other ear so for now I have stopped the refill.

>

> I will let you all know what or if I find out anything more.

>

> A good thing came out of this. I had a Brain and IOC MRI for the

hearing

> loss and it was discovered that I had had two mini strokes in the

past year

> since the last MRI due to the Meningitis. The neurologist is doing

further

> tests. I never even knew!

>

> In Hope of Healing,

>

>

>