On hearing loss and question for the group

[Guest guest]

Hello, all

I did a search of all the posts we have with " hearing " in them (about

80). I browsed through about 3/4 of them. It seems that only

and Kathy are having problems in this area. One of you

( or Kathy, I can't remember) was good enough to post that

your doc had been in touch with Genentech and that 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, at this point Doug, and I are in a quandry about

what to do regarding continuing to allow posts on this topic. On the

one hand, we want this to be a place where all group members feel

comfortable posting concerns about possible side effects. We

certainly want folks who have an unusual side effect which has been

confirmed by their specialist AND by Genentech to let us know. On the

other hand, so many posts about a side effect that is only affecting

two of us and which is still being confirmed as being related to

Xolair may put people off from participating in the group and/or

unfairly weigh folks' own risk-benefit analysis, especially since

Xolair has made incredibly positive changes in most of our lives

without side effects. Also, so many posts about a subject that is

only affecting two of us might need to take place through one-on-one

email and not in the group forum with those people sharing outcome

information with the group when they have it.

At any rate, all of you have been very supportive of our efforts to

moderate the group responsibly. I thought we should let all of you

know that we are struggling on how far to go in allowing these types

of discussions. We feel we should sort out how to handle this now,

while we have and Kathy who have been responsible posters

and who do not post messages that would automatically lead to panic

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.

I hope all this made sense. We value ALL of your input and are

interested in what all of you as group members think about this.

Thank you in advance for your support,

Addy

Group co-owner

Lifelong allergic asthmatic

Xolair user nearly three years

whose second head

is losing all its hair.