Looking for prednisone substitute to treat ABPA for CF

JennifersHope

New member
I have been on steroids for a little over three years now without a break, and I won't ever get a break again till I am not alive anymore.. I need them for another reason other then CF but I can tell you for sure when I am on higher doses of steroids I have to take ativan, or sleeping pills or both.. I am just to antsy or high strung.. moody, emotional.. sort of like a real bad case of PMS... I don't currently need anything long term just for when I am on high doses...
 

JennifersHope

New member
I have been on steroids for a little over three years now without a break, and I won't ever get a break again till I am not alive anymore.. I need them for another reason other then CF but I can tell you for sure when I am on higher doses of steroids I have to take ativan, or sleeping pills or both.. I am just to antsy or high strung.. moody, emotional.. sort of like a real bad case of PMS... I don't currently need anything long term just for when I am on high doses...
 

LouLou

New member
Check out this past post on this subject if you haven't stumbled upon it in a search already.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1149&threadid=13884&enterthread=y">Xolair and CF</a>

I culture aspergillus but don't have an ABPA diagnosis.
 

LouLou

New member
Check out this past post on this subject if you haven't stumbled upon it in a search already.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1149&threadid=13884&enterthread=y">Xolair and CF</a>

I culture aspergillus but don't have an ABPA diagnosis.
 

LouLou

New member
Check out this past post on this subject if you haven't stumbled upon it in a search already.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=1149&threadid=13884&enterthread=y">Xolair and CF</a>

I culture aspergillus but don't have an ABPA diagnosis.
 

lightNlife

New member
The problem with using prednisone to treat ABPA, is that it doesn't truly "treat" it. It only addresses the issue of the inflammation that is the allergic response. The fungus itself needs to be wiped out, and that is exceedingly difficult in CF. Additionally, the doctor may be deciding whether the prednisone is working based solely on how IgE numbers are responding. Again, this is not an ideal approach to treating ABPA.

An anti-fungal such as itraconozole, V-fend or sporanox are the best available options for getting close to reducing the mold growth. Unfortunately, these are very expensive, and insurance companies are loathe to fill these on a long-term basis.

Speaking strictly from the quality of life point of view, I opted for the sporanox and not the prednisone. I had so many side effects from the steroid alone, that it was a no-contest decision.

Read more about my experience with ABPA here:

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=aspergillus">Fungus Among Us (a blog entry)</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/78634/limiting_exposure_to_mold_in_the_home.html">Article on Mold Growth, CF and Allergies</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.helium.com/tm/112521">ABPA Explained (some repeat info from the others)</a>
 

lightNlife

New member
The problem with using prednisone to treat ABPA, is that it doesn't truly "treat" it. It only addresses the issue of the inflammation that is the allergic response. The fungus itself needs to be wiped out, and that is exceedingly difficult in CF. Additionally, the doctor may be deciding whether the prednisone is working based solely on how IgE numbers are responding. Again, this is not an ideal approach to treating ABPA.

An anti-fungal such as itraconozole, V-fend or sporanox are the best available options for getting close to reducing the mold growth. Unfortunately, these are very expensive, and insurance companies are loathe to fill these on a long-term basis.

Speaking strictly from the quality of life point of view, I opted for the sporanox and not the prednisone. I had so many side effects from the steroid alone, that it was a no-contest decision.

Read more about my experience with ABPA here:

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=aspergillus">Fungus Among Us (a blog entry)</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/78634/limiting_exposure_to_mold_in_the_home.html">Article on Mold Growth, CF and Allergies</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.helium.com/tm/112521">ABPA Explained (some repeat info from the others)</a>
 

lightNlife

New member
The problem with using prednisone to treat ABPA, is that it doesn't truly "treat" it. It only addresses the issue of the inflammation that is the allergic response. The fungus itself needs to be wiped out, and that is exceedingly difficult in CF. Additionally, the doctor may be deciding whether the prednisone is working based solely on how IgE numbers are responding. Again, this is not an ideal approach to treating ABPA.

An anti-fungal such as itraconozole, V-fend or sporanox are the best available options for getting close to reducing the mold growth. Unfortunately, these are very expensive, and insurance companies are loathe to fill these on a long-term basis.

Speaking strictly from the quality of life point of view, I opted for the sporanox and not the prednisone. I had so many side effects from the steroid alone, that it was a no-contest decision.

Read more about my experience with ABPA here:

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithcf.blogspot.com/search?q=aspergillus">Fungus Among Us (a blog entry)</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.associatedcontent.com/article/78634/limiting_exposure_to_mold_in_the_home.html">Article on Mold Growth, CF and Allergies</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.helium.com/tm/112521">ABPA Explained (some repeat info from the others)</a>
 

sue35

New member
I take sporonox and was able to go from 40mg every other day to 10mg every other day of prednisone. But I have been on it my whole life and will probably always be on it. When I get sick nothing works but a bump in the prednisone.
 

sue35

New member
I take sporonox and was able to go from 40mg every other day to 10mg every other day of prednisone. But I have been on it my whole life and will probably always be on it. When I get sick nothing works but a bump in the prednisone.
 

sue35

New member
I take sporonox and was able to go from 40mg every other day to 10mg every other day of prednisone. But I have been on it my whole life and will probably always be on it. When I get sick nothing works but a bump in the prednisone.
 
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