friendly reminder from your moderators

[Guest guest]

We have had some discussions on the board recently about taking more

than the prescribed dose of Xolair, about taking it more frequently

than prescribed, etc. I think that this is a good place for us to

have these discussions, since few of us know people who are as

allergic as we are and need Xolair so badly AND understand what our

lives have been like living in a bubble sucking on evil candy. I

know that a couple of folks had their thyroid tested after our

discussions and research on hair loss and discovered that they had

previously undiagnosed thyroid conditions and might have gone on a

long time without treatment if it hadn't been for discussions that

took place in this group. THAT SAID, Doug, and I want to

emphasize that everyone needs to discuss ANY decision about changes

in treatment with his/her own physician before doing so. If you

have a conservative physician, you can always get a second opinion

or encourage your physician to talk to the area Genentech Xolair rep

to try to get more information. Another possibility might be to get

your specialist to call a specialist at one of the major research

universities for a consult. National Jewish, the Mayo Clinics, the

Cleveland Clinic, and s Hopkins have major allergy/asthma

departments and I think all of them were involved in the Xolair

clinical trials from the get go.

Pat, the Xolair specialty pharmacy nurse, seems to be no longer with

us, but she did once encourage a member who would be on a trip on

her usual Xolair day to talk to her doctor about getting her dose

just before she went on the trip, a couple of days before her normal

day, rather than be a week late with her dose. One of you takes

a " half " dose in the middle of the dosing period, but only with the

approval of his doctor. These are excellent examples of appropriate

changes made in the standard treatment plan in consult with one's

doctor.

Take care, all of you, and have a great weekend.

Addy

(the material contained herein may or may not be protected by

attorney-client privilege; may not be reproduced without the

expressed written consent of major league baseball; and may cause

headaches, nausea and diarrhea. If these symptoms continue for more

than a week, discontinue use and call your doctor.)