starting Xolair

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LouLou

New member
Much to my surprise my insurance actually approved Xolair injections. The reason for my surprise is my pre/post albuterol pfts were identical. At least the print out looked like it to me. Does anyone know which number they really care about to define an "asthma component" to our cf. Also my IgE level is 80. (Not crazy high) But since evidence has shown it beneficial to those with an IgE over 30 I'm willing to give it a try. I culture one colony of aspergillus occasionally. My cf doc doesn't think this is going to help but is playing along with my allergist and my wishes.

How many months do you think I'll need to try it to see if it makes a difference?

Any real risks?
 
L

LouLou

New member
Much to my surprise my insurance actually approved Xolair injections. The reason for my surprise is my pre/post albuterol pfts were identical. At least the print out looked like it to me. Does anyone know which number they really care about to define an "asthma component" to our cf. Also my IgE level is 80. (Not crazy high) But since evidence has shown it beneficial to those with an IgE over 30 I'm willing to give it a try. I culture one colony of aspergillus occasionally. My cf doc doesn't think this is going to help but is playing along with my allergist and my wishes.

How many months do you think I'll need to try it to see if it makes a difference?

Any real risks?
 
L

LouLou

New member
Much to my surprise my insurance actually approved Xolair injections. The reason for my surprise is my pre/post albuterol pfts were identical. At least the print out looked like it to me. Does anyone know which number they really care about to define an "asthma component" to our cf. Also my IgE level is 80. (Not crazy high) But since evidence has shown it beneficial to those with an IgE over 30 I'm willing to give it a try. I culture one colony of aspergillus occasionally. My cf doc doesn't think this is going to help but is playing along with my allergist and my wishes.
<br />
<br />How many months do you think I'll need to try it to see if it makes a difference?
<br />
<br />Any real risks?
 
C

cfstinabug

New member
I have a very very severe asthmatic component to my CF. I was on prednisone for 15 years straight. I finally discovered Xolair. It took about 8 months before I started noticing a difference and about a year before it took full effect. Some patients notice a difference in as early as 6 months. It has been a life changing experience for me. However, I am not sure if you will see a difference because it seems things are pretty stable. M y pre/post albuterol pfts used to be 10-15% difference. But - it's worth a shot. Let me know how it works out for you :-D
 
C

cfstinabug

New member
I have a very very severe asthmatic component to my CF. I was on prednisone for 15 years straight. I finally discovered Xolair. It took about 8 months before I started noticing a difference and about a year before it took full effect. Some patients notice a difference in as early as 6 months. It has been a life changing experience for me. However, I am not sure if you will see a difference because it seems things are pretty stable. M y pre/post albuterol pfts used to be 10-15% difference. But - it's worth a shot. Let me know how it works out for you :-D
 
C

cfstinabug

New member
I have a very very severe asthmatic component to my CF. I was on prednisone for 15 years straight. I finally discovered Xolair. It took about 8 months before I started noticing a difference and about a year before it took full effect. Some patients notice a difference in as early as 6 months. It has been a life changing experience for me. However, I am not sure if you will see a difference because it seems things are pretty stable. M y pre/post albuterol pfts used to be 10-15% difference. But - it's worth a shot. Let me know how it works out for you :-D
 
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