Re: On hearing loss and question for the group

[Guest guest]

I agree that as moderators, this presents a problem as it does not present a

clear cut direction.

I do have to admit that if I was considering starting Xolair now, I have been on

it for16 months, these " side effects " would scare me to death. Prior to starting

Xolair, I researched Xolair, gathered all the information I could from all

sources, including this site. Now, I am not a trusting person, I'm very

suspicious, and have a tendency to believe actual users as opposed to the

medical field and drug companies, probably not rational and could cause me harm

in the future as each of our systems are different. I also have hearing loss in

both ears. I am 60 years old but the loss was diagnosed years ago and is job

related, no I was not a rock musician! Most of us have numerous problems but

none of mine are Xolair related. If I " develop " something, coincidentally to

concur with the start of my taking Xolair, that does not mean it is Xolair

induced or related.

I am still taking all my medications and Xolair is not as dramatic a solution

for me as for some. It should be noted that prior to Xolair I was passing out on

a regular basis from coughing (I never attributed this to asthma). My body was

black and blue all over, I would even fall out of bed as I passed out (I thought

about calling the cops and telling them my wife was beating me up LOL). I could

write and tell everybody not to bother with Xolair because I still have to take

all my medications so you are wasting your time and money. It would be an

inaccurate statement that did not take into account other factors, but could

cause people like me to back away from Xolair when in fact Xolair might be

exactly what I need. I always use to laugh when this site continually said,

" always consult your Dr. " . I am now a firm advocate of that statement and have

had to " learn " to trust my Dr.

I know I have rambled on, but I know how I would have reacted to a preponderance

of negative information when I visited this site. I am very concerned about

giving people the wrong perception.

Were I a moderator, thank goodness I am not, I would have to consider my

priorities and what the mission of this site is. Many of us have been helped

here, and continue to be helped, and the history of this site is that reasonable

voices have prevailed and the moderators have " done their jobs " , exercised

common sense, and are knowledgeable in their decisions,and I for one am

grateful.

Ron

----- Original Message -----

From: pyle456

Sent: Wednesday, August 23, 2006 1:29 PM

Subject: [ ] On hearing loss and question for the group

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.

[Guest guest]

Well said, Ron. I concur with what you said--the moderators have a

responsibility to all the subscribers and are knowledeable. I am glad I am not

in their shoes! I do trust them and I also am one who deeply appreciates this

site. I would not have pursued taking xolair had it not been for this site. It

is still too soon for me to tell if the xolair will help, but I should know by

mountain cedar time!

By the way, my husband is also one who has difficulty trusting anyone in the

medical profession or dental profession as he has had some bad experiences. I

have to remind him that in some cases it is a matter of doing your own homework

and then trusting the doctor. Fortunately he does trust our GP. My husband is

a good balance for me because I am almost too trusting at times. Oh-and one

more thing--I am 68 and just starting on xolair, but my allergic asthma did not

kick in until I was almost 50. I am glad there is something out there that

will help with few to no side effects!

Adah

Carpenter <cowtrail@...> wrote:

I agree that as moderators, this presents a problem as it does not

present a clear cut direction.

I do have to admit that if I was considering starting Xolair now, I have been on

it for16 months, these " side effects " would scare me to death. Prior to starting

Xolair, I researched Xolair, gathered all the information I could from all

sources, including this site. Now, I am not a trusting person, I'm very

suspicious, and have a tendency to believe actual users as opposed to the

medical field and drug companies, probably not rational and could cause me harm

in the future as each of our systems are different. I also have hearing loss in

both ears. I am 60 years old but the loss was diagnosed years ago and is job

related, no I was not a rock musician! Most of us have numerous problems but

none of mine are Xolair related. If I " develop " something, coincidentally to

concur with the start of my taking Xolair, that does not mean it is Xolair

induced or related.

I am still taking all my medications and Xolair is not as dramatic a solution

for me as for some. It should be noted that prior to Xolair I was passing out on

a regular basis from coughing (I never attributed this to asthma). My body was

black and blue all over, I would even fall out of bed as I passed out (I thought

about calling the cops and telling them my wife was beating me up LOL). I could

write and tell everybody not to bother with Xolair because I still have to take

all my medications so you are wasting your time and money. It would be an

inaccurate statement that did not take into account other factors, but could

cause people like me to back away from Xolair when in fact Xolair might be

exactly what I need. I always use to laugh when this site continually said,

" always consult your Dr. " . I am now a firm advocate of that statement and have

had to " learn " to trust my Dr.

I know I have rambled on, but I know how I would have reacted to a preponderance

of negative information when I visited this site. I am very concerned about

giving people the wrong perception.

Were I a moderator, thank goodness I am not, I would have to consider my

priorities and what the mission of this site is. Many of us have been helped

here, and continue to be helped, and the history of this site is that reasonable

voices have prevailed and the moderators have " done their jobs " , exercised

common sense, and are knowledgeable in their decisions,and I for one am

grateful.

Ron

----- Original Message -----

From: pyle456

Sent: Wednesday, August 23, 2006 1:29 PM

Subject: [ ] On hearing loss and question for the group

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.