Xolair

[tlbjww]

My 19yoswcf considered Xolair for ABPA when it first came out some years ago, but we decided against it because it was so new.
Now he is considering it again, though we are certainly concerned about its possible severe side effects. His CF physician has never heard of pwcf using it for ABPA. Can people on this forum who are currently using Xolair for ABPA tell me what CF care centers they are attending?
Terry White, parent of 19yoswcf

 

[tlbjww]

My 19yoswcf considered Xolair for ABPA when it first came out some years ago, but we decided against it because it was so new.
Now he is considering it again, though we are certainly concerned about its possible severe side effects. His CF physician has never heard of pwcf using it for ABPA. Can people on this forum who are currently using Xolair for ABPA tell me what CF care centers they are attending?
Terry White, parent of 19yoswcf

 

[tlbjww]

My 19yoswcf considered Xolair for ABPA when it first came out some years ago, but we decided against it because it was so new.
Now he is considering it again, though we are certainly concerned about its possible severe side effects. His CF physician has never heard of pwcf using it for ABPA. Can people on this forum who are currently using Xolair for ABPA tell me what CF care centers they are attending?
Terry White, parent of 19yoswcf

 

[tlbjww]

My 19yoswcf considered Xolair for ABPA when it first came out some years ago, but we decided against it because it was so new.
Now he is considering it again, though we are certainly concerned about its possible severe side effects. His CF physician has never heard of pwcf using it for ABPA. Can people on this forum who are currently using Xolair for ABPA tell me what CF care centers they are attending?
Terry White, parent of 19yoswcf

 

[tlbjww]

My 19yoswcf considered Xolair for ABPA when it first came out some years ago, but we decided against it because it was so new.
<br />Now he is considering it again, though we are certainly concerned about its possible severe side effects. His CF physician has never heard of pwcf using it for ABPA. Can people on this forum who are currently using Xolair for ABPA tell me what CF care centers they are attending?
<br />Terry White, parent of 19yoswcf

 

[mom2lillian]

Terry-I would be happy to discolose my center in PM however as I mentioned above my center is NOT the one rx'ing it nor have they for any of their patients so I am not sure how that would aide you but I would be happy to help in any way I can.

The side effect is ~1% risk anaphylactic shock, I personally dont think its 'that' bad. Keep in mind MOST of the cases are not severe, just a few and they have been IMO blown out of proportion, that is also why you now have to have them in an office with a doctor present, wait 30 minutes post injection AND be issued an epi pen and carry it around for 24 hours post each shot. I think the precautions are well covered and worth the risk--again IMO.

 

[mom2lillian]

Terry-I would be happy to discolose my center in PM however as I mentioned above my center is NOT the one rx'ing it nor have they for any of their patients so I am not sure how that would aide you but I would be happy to help in any way I can.

The side effect is ~1% risk anaphylactic shock, I personally dont think its 'that' bad. Keep in mind MOST of the cases are not severe, just a few and they have been IMO blown out of proportion, that is also why you now have to have them in an office with a doctor present, wait 30 minutes post injection AND be issued an epi pen and carry it around for 24 hours post each shot. I think the precautions are well covered and worth the risk--again IMO.

 

[mom2lillian]

Terry-I would be happy to discolose my center in PM however as I mentioned above my center is NOT the one rx'ing it nor have they for any of their patients so I am not sure how that would aide you but I would be happy to help in any way I can.

The side effect is ~1% risk anaphylactic shock, I personally dont think its 'that' bad. Keep in mind MOST of the cases are not severe, just a few and they have been IMO blown out of proportion, that is also why you now have to have them in an office with a doctor present, wait 30 minutes post injection AND be issued an epi pen and carry it around for 24 hours post each shot. I think the precautions are well covered and worth the risk--again IMO.

 

[mom2lillian]

Terry-I would be happy to discolose my center in PM however as I mentioned above my center is NOT the one rx'ing it nor have they for any of their patients so I am not sure how that would aide you but I would be happy to help in any way I can.

The side effect is ~1% risk anaphylactic shock, I personally dont think its 'that' bad. Keep in mind MOST of the cases are not severe, just a few and they have been IMO blown out of proportion, that is also why you now have to have them in an office with a doctor present, wait 30 minutes post injection AND be issued an epi pen and carry it around for 24 hours post each shot. I think the precautions are well covered and worth the risk--again IMO.

 

[mom2lillian]

Terry-I would be happy to discolose my center in PM however as I mentioned above my center is NOT the one rx'ing it nor have they for any of their patients so I am not sure how that would aide you but I would be happy to help in any way I can.
<br />
<br />The side effect is ~1% risk anaphylactic shock, I personally dont think its 'that' bad. Keep in mind MOST of the cases are not severe, just a few and they have been IMO blown out of proportion, that is also why you now have to have them in an office with a doctor present, wait 30 minutes post injection AND be issued an epi pen and carry it around for 24 hours post each shot. I think the precautions are well covered and worth the risk--again IMO.
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