ABPA help

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tammykrumrey

Guest
<P>My 13 year old daughter, Kayla, has been dealing with ABPA for a while now.  She started VFend (40 mg/2x/day) back in October, and has been on it ever since.  She was also put on Prednisone, and weaned off by early January.  In October, IGE levels were about 1600.  In January they are up to 2400.  </P>
<P> </P>
<P>She was admitted to hospital last month, and her levels went up to 5600, and her IGE Aspergillus specific numbers more than doubled!  She did 18 days of IV meds, and was put on Prednisone again.  We have tried weaning her Prednisone, but once we got down to 10mg/day, her cough has come back to the point where she (and half our family) can't sleep with all the coughing going on at night.  </P>
<P> </P>
<P>I was completely shocked that her levels have gone up so high, since she never misses a single dose of her VFend!  We do not have any water leaks or anything in our home.  I just don't know what to do, besides keep her in a bubble <img src="i/expressions/face-icon-small-smile.gif" border="0">  She hates the Prednisone because of the weight gain and moon face that she gets.  I am now worried that it may be difficult to get her off of them.</P>
<P> </P>
<P>I have a call in for her CF doctor.  But was just curious as to if anyone else has not had great success with VFend.  And if you were able to get off the Predinsone.</P>
 
T

tammykrumrey

Guest
<P>My 13 year old daughter, Kayla, has been dealing with ABPA for a while now. She started VFend (40 mg/2x/day) back in October, and has been on it ever since. She was also put on Prednisone, and weaned off by early January. In October, IGE levels were about 1600. In January they are up to 2400. </P>
<P></P>
<P>She was admitted to hospital last month, and her levels went up to 5600, and her IGE Aspergillus specific numbers more than doubled! She did 18 days of IV meds, and was put on Prednisone again. We have tried weaning her Prednisone, but once we got down to 10mg/day, her cough has come back to the point where she (and half our family) can't sleep with all the coughing going on at night. </P>
<P></P>
<P>I was completely shocked that her levels have gone up so high, since she never misses a single dose of her VFend! We do not have any water leaks or anything in our home. I just don't know what to do, besides keep her in a bubble <img src="i/expressions/face-icon-small-smile.gif" border="0"> She hates the Prednisone because of the weight gain and moon face that she gets. I am now worried that it may be difficult to get her off of them.</P>
<P></P>
<P>I have a call in for her CF doctor. But was just curious as to if anyone else has not had great success with VFend. And if you were able to get off the Predinsone.</P>
 
T

tammykrumrey

Guest
<P><BR>My 13 year old daughter, Kayla, has been dealing with ABPA for a while now. She started VFend (40 mg/2x/day) back in October, and has been on it ever since. She was also put on Prednisone, and weaned off by early January. In October, IGE levels were about 1600. In January they are up to 2400. </P>
<P></P>
<P>She was admitted to hospital last month, and her levels went up to 5600, and her IGE Aspergillus specific numbers more than doubled! She did 18 days of IV meds, and was put on Prednisone again. We have tried weaning her Prednisone, but once we got down to 10mg/day, her cough has come back to the point where she (and half our family) can't sleep with all the coughing going on at night. </P>
<P></P>
<P>I was completely shocked that her levels have gone up so high, since she never misses a single dose of her VFend! We do not have any water leaks or anything in our home. I just don't know what to do, besides keep her in a bubble <img src="i/expressions/face-icon-small-smile.gif" border="0"> She hates the Prednisone because of the weight gain and moon face that she gets. I am now worried that it may be difficult to get her off of them.</P>
<P></P>
<P>I have a call in for her CF doctor. But was just curious as to if anyone else has not had great success with VFend. And if you were able to get off the Predinsone.</P>
 
C

carmick

New member
Have they checked the levels of VFend in her blood lately? 40 mgs is a tiny dose (the pediatric dosing is 4mg/kg every 12 hrs). With our overactive CF livers, if anything we often need an extra large dose. I have to take 400 mgs BID instead of the 200 mgs recommended to maintain therapeutic levels. Granted, I am 27 and trying to kill off a different species of mold, so your daughter would probably need a different dose than I take. I would recommend having your doc do the blood test to check her levels.
 
C

carmick

New member
Have they checked the levels of VFend in her blood lately? 40 mgs is a tiny dose (the pediatric dosing is 4mg/kg every 12 hrs). With our overactive CF livers, if anything we often need an extra large dose. I have to take 400 mgs BID instead of the 200 mgs recommended to maintain therapeutic levels. Granted, I am 27 and trying to kill off a different species of mold, so your daughter would probably need a different dose than I take. I would recommend having your doc do the blood test to check her levels.
 
C

carmick

New member
Have they checked the levels of VFend in her blood lately? 40 mgs is a tiny dose (the pediatric dosing is 4mg/kg every 12 hrs). With our overactive CF livers, if anything we often need an extra large dose. I have to take 400 mgs BID instead of the 200 mgs recommended to maintain therapeutic levels. Granted, I am 27 and trying to kill off a different species of mold, so your daughter would probably need a different dose than I take. I would recommend having your doc do the blood test to check her levels.
 
Y

yrmathews

New member
I will find out in about a week if I have ABPA. They took blood work Wednesday to check my IGE levels and are checking my sputum culture. I am on 40mg of prednisone for two weeks right now. I was on 40mg then tapered down to 10 a day but after I went to my clinic visit it's back up to 40mg a day. My wife noticed the moon face look too. I was wondering what that was from. So no stopping the prednisone yet for me. Good luck I hope your levels come down.
 
Y

yrmathews

New member
I will find out in about a week if I have ABPA. They took blood work Wednesday to check my IGE levels and are checking my sputum culture. I am on 40mg of prednisone for two weeks right now. I was on 40mg then tapered down to 10 a day but after I went to my clinic visit it's back up to 40mg a day. My wife noticed the moon face look too. I was wondering what that was from. So no stopping the prednisone yet for me. Good luck I hope your levels come down.
 
Y

yrmathews

New member
I will find out in about a week if I have ABPA. They took blood work Wednesday to check my IGE levels and are checking my sputum culture. I am on 40mg of prednisone for two weeks right now. I was on 40mg then tapered down to 10 a day but after I went to my clinic visit it's back up to 40mg a day. My wife noticed the moon face look too. I was wondering what that was from. So no stopping the prednisone yet for me. Good luck I hope your levels come down.
 
T

tammykrumrey

Guest
<P>Opps!  I meant to say 40 mg/ 2 times a day!  And, no, they haven't checked the levels of the VFend...that I am aware of (unless that was done while she was admitted, and I wasn't told about it).  I will ask about that!  Thanks!</P>
<P> </P>
 
T

tammykrumrey

Guest
<P>Opps! I meant to say 40 mg/ 2 times a day! And, no, they haven't checked the levels of the VFend...that I am aware of (unless that was done while she was admitted, and I wasn't told about it). I will ask about that! Thanks!</P>
<P></P>
 
T

tammykrumrey

Guest
<P>Opps! I meant to say 40 mg/ 2 times a day! And, no, they haven't checked the levels of the VFend...that I am aware of (unless that was done while she was admitted, and I wasn't told about it). I will ask about that! Thanks!</P>
<P><BR></P>
 
Y

yrmathews

New member
I do have APBA also. I just got out of the hospital yesterday. They put me on 200mg of VFEND twice a day. And I was on 40mg of steroids a day at the hospital. The steroids will be tapered down to 10mg a day. I hope the VFEND works. The dr. told me I will be on 10mg of steroids indefinately. And of course home iv's for at least 10 days.
 
Y

yrmathews

New member
I do have APBA also. I just got out of the hospital yesterday. They put me on 200mg of VFEND twice a day. And I was on 40mg of steroids a day at the hospital. The steroids will be tapered down to 10mg a day. I hope the VFEND works. The dr. told me I will be on 10mg of steroids indefinately. And of course home iv's for at least 10 days.
 
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