Hearing loss - my last post on this subject

[Guest guest]

Hello, all,

I did a search of all the posts we have had with " hearing loss " in

them. I went through about 60 of the more than 80 posts that

include this phrase in them. It seems that only and Kathy

are having trouble that may be associated with Xolair. One of you -

I don't remember which one - posted that you or your doc had been in

touch with Genentech and t hat only a few patients had/have

reported " associated " hearing loss and that some of them had other

issues which were more likely to cause the hearing loss than Xolair.

To be honest, Doug, and I are in a quandry over continuing

posts on this subject. THe mechanism of action of Xolair does NOT

indicate any likely or potential ill effects to hearing. That said,

that does not mean that there will not be a small number of patients

who experience side effects that are not usual. We want this to be

a place where all group members feel comfortable posting concerns

about possible side effects and we certainly want anyone who has an

unusual side effect which is confirmed by both his/her specialist

and Genentech to let all of us know about it. However, we do NOT

want it to be a place where new users are scared off of trying

Xolair which has made incredible positive changes in most of our

lives without side effects. Doug is more sensitive to this than I

am. I am the liberal-free-speech one and so I have a different take

on this sort of thing than he does.

Anyway, all of you have been very supportive of our efforts to

moderate the group responsibly. I thought we should let you know

that we're struggling in this area. We feel we should sort of

figure out how to handle this now, while we have and Kathy

who have been very responsible posters who do not post messages that

would lead to panic or anything and before we have someone come on

the board who says stuff like " Xolair is causing me to grow a third

head, " or something like that. If anyone has any suggestions or

comments on what direction you would like us to take, that would be

helpful.

Thank you in advance for your support,

Addy

Group co-owner

Lifelong allergic asthmatic

Xolair users 3 years

My second head is losing all its hair and my eyes look funny when I

look in the mirror