ABPA, high IGE, steroids, xolair

Keepercjr · Oct 30, 2009

I have been unofficially diagnosed with ABPA for many years now but I have never been treated for it. I have also had bad asthma for a long time (8-10 years?). Some days my asthma is good, others it is not. I would say that asthma is the main component of CF for me.

My IGE has been as high as 5000 (aka extremely elevated) but I believe it is now somewhere between 2-3000 (can't remember the # and still extremely elevated) and has climbed since my last draw several months ago. My "new" CF doctor (been going to the clinic for 4 years now) called last week and says "you have ABPA and we want to treat you for it". Oh and my Aspergillus specific IGE was elevated though I don't remember the #. I had allergy testing done probably 6-7 years ago and I literally had a reaction to every single thing they tested including aspergillus. I don't get seasonal allergies though. Maybe it all manifests as asthma?

Currently my asthma is only controlled by Adviar 500/50 which I have been on for a long time. I don't have the complete plan of action from my CF team but I will soon. I do know that it is high dose prednisone for a minimum of 6 weeks but hopefully switching to xolair at some point.

My questions would be these: When you were diagnosed w/ ABPA how high was your IGE? How long were you on steriods? Were you able to bring it down to somewhat normal levels? Did you switch to Xolair and if so, at what point in your treatment? Did you start off w/ Xolair and skip prednisone? Is my IGE too high to skip the pred step? Were the treatments effective? Should I see a decrease in my asthma symptoms?

I hate prednisone. Every time I have been on it I get insomnia and my face gets flushed. I should be speaking to my doc either tomorrow or next week. My clinic is not local so I can't just make an appointment and go see them even though that is what she wants me to do. It is hard enough getting there every 3 months. I just want some stories and insight as to what to do or what the right course is.

Thanks in advance!

Keepercjr · Oct 30, 2009

I have been unofficially diagnosed with ABPA for many years now but I have never been treated for it. I have also had bad asthma for a long time (8-10 years?). Some days my asthma is good, others it is not. I would say that asthma is the main component of CF for me.

My IGE has been as high as 5000 (aka extremely elevated) but I believe it is now somewhere between 2-3000 (can't remember the # and still extremely elevated) and has climbed since my last draw several months ago. My "new" CF doctor (been going to the clinic for 4 years now) called last week and says "you have ABPA and we want to treat you for it". Oh and my Aspergillus specific IGE was elevated though I don't remember the #. I had allergy testing done probably 6-7 years ago and I literally had a reaction to every single thing they tested including aspergillus. I don't get seasonal allergies though. Maybe it all manifests as asthma?

Currently my asthma is only controlled by Adviar 500/50 which I have been on for a long time. I don't have the complete plan of action from my CF team but I will soon. I do know that it is high dose prednisone for a minimum of 6 weeks but hopefully switching to xolair at some point.

My questions would be these: When you were diagnosed w/ ABPA how high was your IGE? How long were you on steriods? Were you able to bring it down to somewhat normal levels? Did you switch to Xolair and if so, at what point in your treatment? Did you start off w/ Xolair and skip prednisone? Is my IGE too high to skip the pred step? Were the treatments effective? Should I see a decrease in my asthma symptoms?

I hate prednisone. Every time I have been on it I get insomnia and my face gets flushed. I should be speaking to my doc either tomorrow or next week. My clinic is not local so I can't just make an appointment and go see them even though that is what she wants me to do. It is hard enough getting there every 3 months. I just want some stories and insight as to what to do or what the right course is.

Thanks in advance!

Keepercjr · Oct 30, 2009

I have been unofficially diagnosed with ABPA for many years now but I have never been treated for it. I have also had bad asthma for a long time (8-10 years?). Some days my asthma is good, others it is not. I would say that asthma is the main component of CF for me.

My IGE has been as high as 5000 (aka extremely elevated) but I believe it is now somewhere between 2-3000 (can't remember the # and still extremely elevated) and has climbed since my last draw several months ago. My "new" CF doctor (been going to the clinic for 4 years now) called last week and says "you have ABPA and we want to treat you for it". Oh and my Aspergillus specific IGE was elevated though I don't remember the #. I had allergy testing done probably 6-7 years ago and I literally had a reaction to every single thing they tested including aspergillus. I don't get seasonal allergies though. Maybe it all manifests as asthma?

Currently my asthma is only controlled by Adviar 500/50 which I have been on for a long time. I don't have the complete plan of action from my CF team but I will soon. I do know that it is high dose prednisone for a minimum of 6 weeks but hopefully switching to xolair at some point.

My questions would be these: When you were diagnosed w/ ABPA how high was your IGE? How long were you on steriods? Were you able to bring it down to somewhat normal levels? Did you switch to Xolair and if so, at what point in your treatment? Did you start off w/ Xolair and skip prednisone? Is my IGE too high to skip the pred step? Were the treatments effective? Should I see a decrease in my asthma symptoms?

I hate prednisone. Every time I have been on it I get insomnia and my face gets flushed. I should be speaking to my doc either tomorrow or next week. My clinic is not local so I can't just make an appointment and go see them even though that is what she wants me to do. It is hard enough getting there every 3 months. I just want some stories and insight as to what to do or what the right course is.

Thanks in advance!

Keepercjr · Oct 30, 2009

I have been unofficially diagnosed with ABPA for many years now but I have never been treated for it. I have also had bad asthma for a long time (8-10 years?). Some days my asthma is good, others it is not. I would say that asthma is the main component of CF for me.

My IGE has been as high as 5000 (aka extremely elevated) but I believe it is now somewhere between 2-3000 (can't remember the # and still extremely elevated) and has climbed since my last draw several months ago. My "new" CF doctor (been going to the clinic for 4 years now) called last week and says "you have ABPA and we want to treat you for it". Oh and my Aspergillus specific IGE was elevated though I don't remember the #. I had allergy testing done probably 6-7 years ago and I literally had a reaction to every single thing they tested including aspergillus. I don't get seasonal allergies though. Maybe it all manifests as asthma?

Currently my asthma is only controlled by Adviar 500/50 which I have been on for a long time. I don't have the complete plan of action from my CF team but I will soon. I do know that it is high dose prednisone for a minimum of 6 weeks but hopefully switching to xolair at some point.

My questions would be these: When you were diagnosed w/ ABPA how high was your IGE? How long were you on steriods? Were you able to bring it down to somewhat normal levels? Did you switch to Xolair and if so, at what point in your treatment? Did you start off w/ Xolair and skip prednisone? Is my IGE too high to skip the pred step? Were the treatments effective? Should I see a decrease in my asthma symptoms?

I hate prednisone. Every time I have been on it I get insomnia and my face gets flushed. I should be speaking to my doc either tomorrow or next week. My clinic is not local so I can't just make an appointment and go see them even though that is what she wants me to do. It is hard enough getting there every 3 months. I just want some stories and insight as to what to do or what the right course is.

Thanks in advance!

Keepercjr · Oct 30, 2009

I have been unofficially diagnosed with ABPA for many years now but I have never been treated for it. I have also had bad asthma for a long time (8-10 years?). Some days my asthma is good, others it is not. I would say that asthma is the main component of CF for me.
 
 My IGE has been as high as 5000 (aka extremely elevated) but I believe it is now somewhere between 2-3000 (can't remember the # and still extremely elevated) and has climbed since my last draw several months ago. My "new" CF doctor (been going to the clinic for 4 years now) called last week and says "you have ABPA and we want to treat you for it". Oh and my Aspergillus specific IGE was elevated though I don't remember the #. I had allergy testing done probably 6-7 years ago and I literally had a reaction to every single thing they tested including aspergillus. I don't get seasonal allergies though. Maybe it all manifests as asthma?
 
 Currently my asthma is only controlled by Adviar 500/50 which I have been on for a long time. I don't have the complete plan of action from my CF team but I will soon. I do know that it is high dose prednisone for a minimum of 6 weeks but hopefully switching to xolair at some point.
 
 My questions would be these: When you were diagnosed w/ ABPA how high was your IGE? How long were you on steriods? Were you able to bring it down to somewhat normal levels? Did you switch to Xolair and if so, at what point in your treatment? Did you start off w/ Xolair and skip prednisone? Is my IGE too high to skip the pred step? Were the treatments effective? Should I see a decrease in my asthma symptoms?
 
 I hate prednisone. Every time I have been on it I get insomnia and my face gets flushed. I should be speaking to my doc either tomorrow or next week. My clinic is not local so I can't just make an appointment and go see them even though that is what she wants me to do. It is hard enough getting there every 3 months. I just want some stories and insight as to what to do or what the right course is.
 
 Thanks in advance!

Zara · Oct 30, 2009

Hi i was also diagnosed with ABPA a whole ago, when they first found out i had it my IgE level was 1000 and so i was put on steroids and antifungals for 6 months and it finally then came down to 400, but unfortunately mine is going back up again and is at 1000 again, so they are treating me for it now once again with steroids.

Zara · Oct 30, 2009

Hi i was also diagnosed with ABPA a whole ago, when they first found out i had it my IgE level was 1000 and so i was put on steroids and antifungals for 6 months and it finally then came down to 400, but unfortunately mine is going back up again and is at 1000 again, so they are treating me for it now once again with steroids.

Zara · Oct 30, 2009

Hi i was also diagnosed with ABPA a whole ago, when they first found out i had it my IgE level was 1000 and so i was put on steroids and antifungals for 6 months and it finally then came down to 400, but unfortunately mine is going back up again and is at 1000 again, so they are treating me for it now once again with steroids.

Zara · Oct 30, 2009

Hi i was also diagnosed with ABPA a whole ago, when they first found out i had it my IgE level was 1000 and so i was put on steroids and antifungals for 6 months and it finally then came down to 400, but unfortunately mine is going back up again and is at 1000 again, so they are treating me for it now once again with steroids.

Zara · Oct 30, 2009

Hi i was also diagnosed with ABPA a whole ago, when they first found out i had it my IgE level was 1000 and so i was put on steroids and antifungals for 6 months and it finally then came down to 400, but unfortunately mine is going back up again and is at 1000 again, so they are treating me for it now once again with steroids.

mom2lillian · Oct 30, 2009

you can read on my blog it is this post plus there are a couple later ones on xolair and alot on inflammation. I am sorry I cant keep this informatin on this site anymore so you'll have to go to blogger. Also I have commented on alot other ABPA discussions use the search function on here to find the older posts. OH and mine started around 1200 then steroids took it down to 500 before weaning then over the next 3 years it settled down to around 2-400 before I started the xolair.

<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...-adventure.html
</a>

long story short xolair works with levels <1000 so you'll need the steroids to get down lower, hopefully you can get it low enough. Xolair is phenomenal for me but VERY expensive, every other week the shot is 1000 I am fortunate to have coverage but dont know what your situation is.

They should be culturing you to see if you are culturing aspergillus. If steroids dont work they may try a couple of the other oral drugs but I believe they would NOT be friendly for BF and are long term use sorts of things, the names are escaping me.

I need xanax when taking steroids or I am a COMPLETE high strung but restless mess with insomnia. I also sometimes have to take sleepy time tea or advil PM to get to sleep.

mom2lillian · Oct 30, 2009

you can read on my blog it is this post plus there are a couple later ones on xolair and alot on inflammation. I am sorry I cant keep this informatin on this site anymore so you'll have to go to blogger. Also I have commented on alot other ABPA discussions use the search function on here to find the older posts. OH and mine started around 1200 then steroids took it down to 500 before weaning then over the next 3 years it settled down to around 2-400 before I started the xolair.

<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...-adventure.html
</a>

long story short xolair works with levels <1000 so you'll need the steroids to get down lower, hopefully you can get it low enough. Xolair is phenomenal for me but VERY expensive, every other week the shot is 1000 I am fortunate to have coverage but dont know what your situation is.

They should be culturing you to see if you are culturing aspergillus. If steroids dont work they may try a couple of the other oral drugs but I believe they would NOT be friendly for BF and are long term use sorts of things, the names are escaping me.

I need xanax when taking steroids or I am a COMPLETE high strung but restless mess with insomnia. I also sometimes have to take sleepy time tea or advil PM to get to sleep.

mom2lillian · Oct 30, 2009

you can read on my blog it is this post plus there are a couple later ones on xolair and alot on inflammation. I am sorry I cant keep this informatin on this site anymore so you'll have to go to blogger. Also I have commented on alot other ABPA discussions use the search function on here to find the older posts. OH and mine started around 1200 then steroids took it down to 500 before weaning then over the next 3 years it settled down to around 2-400 before I started the xolair.

<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...-adventure.html
</a>

long story short xolair works with levels <1000 so you'll need the steroids to get down lower, hopefully you can get it low enough. Xolair is phenomenal for me but VERY expensive, every other week the shot is 1000 I am fortunate to have coverage but dont know what your situation is.

They should be culturing you to see if you are culturing aspergillus. If steroids dont work they may try a couple of the other oral drugs but I believe they would NOT be friendly for BF and are long term use sorts of things, the names are escaping me.

I need xanax when taking steroids or I am a COMPLETE high strung but restless mess with insomnia. I also sometimes have to take sleepy time tea or advil PM to get to sleep.

mom2lillian · Oct 30, 2009

you can read on my blog it is this post plus there are a couple later ones on xolair and alot on inflammation. I am sorry I cant keep this informatin on this site anymore so you'll have to go to blogger. Also I have commented on alot other ABPA discussions use the search function on here to find the older posts. OH and mine started around 1200 then steroids took it down to 500 before weaning then over the next 3 years it settled down to around 2-400 before I started the xolair.

<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...-adventure.html
</a>

long story short xolair works with levels <1000 so you'll need the steroids to get down lower, hopefully you can get it low enough. Xolair is phenomenal for me but VERY expensive, every other week the shot is 1000 I am fortunate to have coverage but dont know what your situation is.

They should be culturing you to see if you are culturing aspergillus. If steroids dont work they may try a couple of the other oral drugs but I believe they would NOT be friendly for BF and are long term use sorts of things, the names are escaping me.

I need xanax when taking steroids or I am a COMPLETE high strung but restless mess with insomnia. I also sometimes have to take sleepy time tea or advil PM to get to sleep.

mom2lillian · Oct 30, 2009

you can read on my blog it is this post plus there are a couple later ones on xolair and alot on inflammation. I am sorry I cant keep this informatin on this site anymore so you'll have to go to blogger. Also I have commented on alot other ABPA discussions use the search function on here to find the older posts. OH and mine started around 1200 then steroids took it down to 500 before weaning then over the next 3 years it settled down to around 2-400 before I started the xolair.
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
 ">http://cftoo.blogspot.com/2008...-adventure.html
 </a>
 
 long story short xolair works with levels <1000 so you'll need the steroids to get down lower, hopefully you can get it low enough. Xolair is phenomenal for me but VERY expensive, every other week the shot is 1000 I am fortunate to have coverage but dont know what your situation is.
 
 They should be culturing you to see if you are culturing aspergillus. If steroids dont work they may try a couple of the other oral drugs but I believe they would NOT be friendly for BF and are long term use sorts of things, the names are escaping me.
 
 I need xanax when taking steroids or I am a COMPLETE high strung but restless mess with insomnia. I also sometimes have to take sleepy time tea or advil PM to get to sleep.

mom2lillian · Oct 30, 2009

oh and one more thing if you hadnt had an ige test when you had allergy test you WILL get a + on everything irrelevant to your actuall allergies. Ideally once your IGE is down but you arent on steroids you should be re-skin tested.

ALlergy shots and xolair made a world of difference for me with great lung function improvement, less headaches, less stuffy among otehrs.

mom2lillian · Oct 30, 2009

oh and one more thing if you hadnt had an ige test when you had allergy test you WILL get a + on everything irrelevant to your actuall allergies. Ideally once your IGE is down but you arent on steroids you should be re-skin tested.

ALlergy shots and xolair made a world of difference for me with great lung function improvement, less headaches, less stuffy among otehrs.

mom2lillian · Oct 30, 2009

oh and one more thing if you hadnt had an ige test when you had allergy test you WILL get a + on everything irrelevant to your actuall allergies. Ideally once your IGE is down but you arent on steroids you should be re-skin tested.

ALlergy shots and xolair made a world of difference for me with great lung function improvement, less headaches, less stuffy among otehrs.

mom2lillian · Oct 30, 2009

oh and one more thing if you hadnt had an ige test when you had allergy test you WILL get a + on everything irrelevant to your actuall allergies. Ideally once your IGE is down but you arent on steroids you should be re-skin tested.

ALlergy shots and xolair made a world of difference for me with great lung function improvement, less headaches, less stuffy among otehrs.

mom2lillian · Oct 30, 2009

oh and one more thing if you hadnt had an ige test when you had allergy test you WILL get a + on everything irrelevant to your actuall allergies. Ideally once your IGE is down but you arent on steroids you should be re-skin tested.
 
 ALlergy shots and xolair made a world of difference for me with great lung function improvement, less headaches, less stuffy among otehrs.

ABPA, high IGE, steroids, xolair

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