Aspergillus, ABPA

M

Marjolein

New member
Hi all,
i have a questions for a friend of mine. She has two girls with CF. Her youngest, who is almost six is diagnosed with ABPA. She was diagnosed with it in 2005 and treated successfully from May till July of that year.
But now it's back again and she is on 20mg of Prednison again as of the beginning of September. She was on Trisporal too, but that only made her feel worse. The Prednison should help getting her IgE level down but they are only going up, for the last 5 weeks (from 283 to 535). Her mom is hoping she will have better results tomorrow...

My question for you all is. Has this happened to anyone else? Where the pred didn't work. And what did you have? Was there something else that did work?

Thanks in advance!
 
M

Marjolein

New member
Hi all,
i have a questions for a friend of mine. She has two girls with CF. Her youngest, who is almost six is diagnosed with ABPA. She was diagnosed with it in 2005 and treated successfully from May till July of that year.
But now it's back again and she is on 20mg of Prednison again as of the beginning of September. She was on Trisporal too, but that only made her feel worse. The Prednison should help getting her IgE level down but they are only going up, for the last 5 weeks (from 283 to 535). Her mom is hoping she will have better results tomorrow...

My question for you all is. Has this happened to anyone else? Where the pred didn't work. And what did you have? Was there something else that did work?

Thanks in advance!
 
M

Marjolein

New member
Hi all,
i have a questions for a friend of mine. She has two girls with CF. Her youngest, who is almost six is diagnosed with ABPA. She was diagnosed with it in 2005 and treated successfully from May till July of that year.
But now it's back again and she is on 20mg of Prednison again as of the beginning of September. She was on Trisporal too, but that only made her feel worse. The Prednison should help getting her IgE level down but they are only going up, for the last 5 weeks (from 283 to 535). Her mom is hoping she will have better results tomorrow...

My question for you all is. Has this happened to anyone else? Where the pred didn't work. And what did you have? Was there something else that did work?

Thanks in advance!
 
K

kybert

New member
taking prednisone alone wont fix the problem. it will bring the ige down, or not in this case, but once its stopped it will go back up. your friends daughter needs something else to kill the aspergillus, but you say the trisporal [sporanox] makes her feel bad. how does it make her feel worse? stomach upsets? is it something that can be fixed? has she tried voriconazole [vfend]? seems to be everyone is switching over to voriconazole now because its absorbed better [i was put on it a week ago for the first time]. ive read that the side effects are reduced, but seeing as i never had side effects with sporanox i cant really give a personal view on that. might be worth a try. perhaps they could increase the steroid dosage for just a week and see what happens? tell your friend not to worry too much about the numbers. 283 to 535 in 5 weeks isnt a huge jump.
 
K

kybert

New member
taking prednisone alone wont fix the problem. it will bring the ige down, or not in this case, but once its stopped it will go back up. your friends daughter needs something else to kill the aspergillus, but you say the trisporal [sporanox] makes her feel bad. how does it make her feel worse? stomach upsets? is it something that can be fixed? has she tried voriconazole [vfend]? seems to be everyone is switching over to voriconazole now because its absorbed better [i was put on it a week ago for the first time]. ive read that the side effects are reduced, but seeing as i never had side effects with sporanox i cant really give a personal view on that. might be worth a try. perhaps they could increase the steroid dosage for just a week and see what happens? tell your friend not to worry too much about the numbers. 283 to 535 in 5 weeks isnt a huge jump.
 
K

kybert

New member
taking prednisone alone wont fix the problem. it will bring the ige down, or not in this case, but once its stopped it will go back up. your friends daughter needs something else to kill the aspergillus, but you say the trisporal [sporanox] makes her feel bad. how does it make her feel worse? stomach upsets? is it something that can be fixed? has she tried voriconazole [vfend]? seems to be everyone is switching over to voriconazole now because its absorbed better [i was put on it a week ago for the first time]. ive read that the side effects are reduced, but seeing as i never had side effects with sporanox i cant really give a personal view on that. might be worth a try. perhaps they could increase the steroid dosage for just a week and see what happens? tell your friend not to worry too much about the numbers. 283 to 535 in 5 weeks isnt a huge jump.
 
L

lightNlife

New member
ABPA is one of those things that once you get it, you fight with it from then on. I have ABPA and it's very difficult to control. The prednisone has not worked for me to control the IgE levels. I am on sporanox all the time now and that seems to keep it under control, but like I said, it's one of those things that will not go away.
 
L

lightNlife

New member
ABPA is one of those things that once you get it, you fight with it from then on. I have ABPA and it's very difficult to control. The prednisone has not worked for me to control the IgE levels. I am on sporanox all the time now and that seems to keep it under control, but like I said, it's one of those things that will not go away.
 
L

lightNlife

New member
ABPA is one of those things that once you get it, you fight with it from then on. I have ABPA and it's very difficult to control. The prednisone has not worked for me to control the IgE levels. I am on sporanox all the time now and that seems to keep it under control, but like I said, it's one of those things that will not go away.
 
S

sue35

New member
I was on prednisone for about 15 years and it did the job. But I was on 25mg every other day. Then I went on spornox also and dropped my pred. to 10mg every other day. My Ige level is 450, which wasn't concerning to my doctor. Sometimes it goes up, sometimes down it just depends. I also have had no bad effects from spornox. You don't HAVE to take it, pred. worked for me for 15 years. The only issue is that my doc wanted me on the lowest does possible so he put me on sporonox also.

But don't worry too much, that jump is not big<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sue35

New member
I was on prednisone for about 15 years and it did the job. But I was on 25mg every other day. Then I went on spornox also and dropped my pred. to 10mg every other day. My Ige level is 450, which wasn't concerning to my doctor. Sometimes it goes up, sometimes down it just depends. I also have had no bad effects from spornox. You don't HAVE to take it, pred. worked for me for 15 years. The only issue is that my doc wanted me on the lowest does possible so he put me on sporonox also.

But don't worry too much, that jump is not big<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sue35

New member
I was on prednisone for about 15 years and it did the job. But I was on 25mg every other day. Then I went on spornox also and dropped my pred. to 10mg every other day. My Ige level is 450, which wasn't concerning to my doctor. Sometimes it goes up, sometimes down it just depends. I also have had no bad effects from spornox. You don't HAVE to take it, pred. worked for me for 15 years. The only issue is that my doc wanted me on the lowest does possible so he put me on sporonox also.

But don't worry too much, that jump is not big<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

littletally

New member
One thing I have noticed since I am also diagnosed with ABPA is that sometimes I Ige numbers are high and I can not tell because it's not affecting my lungs. I've noticed when my lungs are getting full then it affects me worse. I also take sporonox but I think you have to be on it a month before it actually starts fighting back. One of those things it has to build up to. I take prednisone (which I'm actually on right now, ugh!) when I start to notice my lungs tightening. I go on a rather large burst though depending how bad it is. Usually it's a three or five day burst on 40 per day then tapering off depending on how my body takes it. I think I have had the abpa thing for a long time and they just discovered it about 4 years ago. It's tough at times to handle it but there are always options somewhere. Do you have plants in your house? They can carry aspergillas and it's best to remove them. Hope this helps some.

Nikki
27/f/cf
 
L

littletally

New member
One thing I have noticed since I am also diagnosed with ABPA is that sometimes I Ige numbers are high and I can not tell because it's not affecting my lungs. I've noticed when my lungs are getting full then it affects me worse. I also take sporonox but I think you have to be on it a month before it actually starts fighting back. One of those things it has to build up to. I take prednisone (which I'm actually on right now, ugh!) when I start to notice my lungs tightening. I go on a rather large burst though depending how bad it is. Usually it's a three or five day burst on 40 per day then tapering off depending on how my body takes it. I think I have had the abpa thing for a long time and they just discovered it about 4 years ago. It's tough at times to handle it but there are always options somewhere. Do you have plants in your house? They can carry aspergillas and it's best to remove them. Hope this helps some.

Nikki
27/f/cf
 
L

littletally

New member
One thing I have noticed since I am also diagnosed with ABPA is that sometimes I Ige numbers are high and I can not tell because it's not affecting my lungs. I've noticed when my lungs are getting full then it affects me worse. I also take sporonox but I think you have to be on it a month before it actually starts fighting back. One of those things it has to build up to. I take prednisone (which I'm actually on right now, ugh!) when I start to notice my lungs tightening. I go on a rather large burst though depending how bad it is. Usually it's a three or five day burst on 40 per day then tapering off depending on how my body takes it. I think I have had the abpa thing for a long time and they just discovered it about 4 years ago. It's tough at times to handle it but there are always options somewhere. Do you have plants in your house? They can carry aspergillas and it's best to remove them. Hope this helps some.

Nikki
27/f/cf
 
You must log in or register to reply here.
Top