Aspergillus

J

jrotier

Guest
<P>Hello everyone,</P>
<P> </P>
<P>Just wanted to get some input and try to make sense out of all this.  I've been having issues for 6-7 months now with increased coughing and wheezing.  We do a course of oral / IV abx and I get better, but my lung function starts to decline and within 2 months, I'm back on abx again.  I've cultured aspergillus for about 10-12 years now along with PA and MRSA.  I've had my IgE checked yearly, and also when I have exacerbations.  I just feel as though my airways are really inflammed and our standard treatment doesn't do the trick.</P>
<P> </P>
<P>I was recently allergy tested and was found to have allergies to molds (unable to determine which one) among other things.  We have made all the household recommendations, matress encasings, filters, ect.  I've been on Advair, Flonase (for years) and have tried multiple OTC allergy medicaitons.  I've been on prednisone, and I know that works, but my clinic is really hesitant to prescribe it with all of the nasty side effects, I tend to agree as I'd rather figure out the cause and go from there.</P>
<P> </P>
<P>I'm wondering if anyone treated for aspergillus with antifungals has done so without a diagnosis of APBA.  I know that most clinics say that it doesn't normally cause problems so they don't treat it unless you are allergic to it.  I wanna tell them "that's what we thought about MRSA!" </P>
<P> </P>
<P>If you were treated and didn't have APBA, did it help? Would you recommend it?  I'm just looking for information so I can go into my doctors and argue my case.  Are there any other diagnostics that might help prove (or disprove) my case?  I just want to feel better and feel like this is only only avenue we haven't tried. </P>
<P> </P>
<P>Thanks!</P>
 
J

jrotier

Guest
<P>Hello everyone,</P>
<P></P>
<P>Just wanted to get some input and try to make sense out of all this. I've been having issues for 6-7 months now with increased coughing and wheezing. We do a course of oral / IV abx and I get better, but my lung function starts to decline and within 2 months, I'm back on abx again. I've cultured aspergillus for about 10-12 years nowalong with PA and MRSA. I've had my IgE checked yearly, and also when I have exacerbations. I just feel as though my airways are really inflammed and our standard treatment doesn't do the trick.</P>
<P></P>
<P>I was recently allergy tested andwas found to have allergies to molds (unable todetermine which one) among other things. We havemade all thehousehold recommendations, matress encasings, filters, ect. I've been on Advair, Flonase (for years)andhave tried multiple OTC allergy medicaitons. I've been on prednisone, and I know that works, but my clinic is really hesitant to prescribe it with all of the nasty side effects, I tend to agree as I'd rather figure out the cause and go from there.</P>
<P></P>
<P>I'm wondering if anyone treated for aspergillus with antifungals has done so without a diagnosis of APBA. I know that most clinics say that it doesn't normally cause problems so they don't treat it unless you are allergic to it. I wanna tell them "that's what we thought about MRSA!" </P>
<P></P>
<P>If you were treated and didn't have APBA, did it help?Would you recommend it? I'm just looking for information so I can go into my doctors and argue my case. Are there any other diagnostics that might help prove (or disprove) my case? I just want to feel better and feel like this is only only avenue we haven't tried.</P>
<P></P>
<P>Thanks!</P>
 
J

jrotier

Guest
<P><BR>Hello everyone,</P>
<P></P>
<P>Just wanted to get some input and try to make sense out of all this. I've been having issues for 6-7 months now with increased coughing and wheezing. We do a course of oral / IV abx and I get better, but my lung function starts to decline and within 2 months, I'm back on abx again. I've cultured aspergillus for about 10-12 years nowalong with PA and MRSA. I've had my IgE checked yearly, and also when I have exacerbations. I just feel as though my airways are really inflammed and our standard treatment doesn't do the trick.</P>
<P></P>
<P>I was recently allergy tested andwas found to have allergies to molds (unable todetermine which one) among other things. We havemade all thehousehold recommendations, matress encasings, filters, ect. I've been on Advair, Flonase (for years)andhave tried multiple OTC allergy medicaitons. I've been on prednisone, and I know that works, but my clinic is really hesitant to prescribe it with all of the nasty side effects, I tend to agree as I'd rather figure out the cause and go from there.</P>
<P></P>
<P>I'm wondering if anyone treated for aspergillus with antifungals has done so without a diagnosis of APBA. I know that most clinics say that it doesn't normally cause problems so they don't treat it unless you are allergic to it. I wanna tell them "that's what we thought about MRSA!" </P>
<P></P>
<P>If you were treated and didn't have APBA, did it help?Would you recommend it? I'm just looking for information so I can go into my doctors and argue my case. Are there any other diagnostics that might help prove (or disprove) my case? I just want to feel better and feel like this is only only avenue we haven't tried.</P>
<P></P>
<P>Thanks!</P>
 
T

tammykrumrey

Guest
<P>I am probably not going to be too much help here, because my daughter has been diagnosed with ABPA.  BUT, it took a long time to get that diagnosis.  She has only cultured Aspergillus maybe one or two times over the past few years.  </P>
<P> </P>
<P>But she has met every other diagnostic criteria.  She has been positively diagnosed based on CXR, ige levels, Aspergillus specific ige levels (or whatever they are called).  And based on the fact that her PFTs have dropped sharply, even after weeks of oral/inhaled antibiotics.  Last fall they dropped from 100% to 46% three weeks after finishing two weeks of IV antibiotics.  </P>
<P> </P>
<P>She has been on VFend since last fall.  I am not sure that it has helped because her ige levels have more than doubled since then.  She was on Prednisone from Oct to Jan.  And because her symptoms are back, she has been put back on Prednisone.  We have tried wheening her off of them, but as soon as we dropped down to 10 mg/day, the symptoms returned.  So she is back up to 20 mg/day, and is doing well.  I agree with your clinic....I hate her being on it!  And now I am worried about how we are going to get her off of it<img src="i/expressions/face-icon-small-sad.gif" border="0">  Last time she had no problems as she came off of them, this time, not so much.</P>
<P> </P>
<P>Her doctor is also starting her on Zithromycin three times a week to help with inflammation.  We will see how this is going to help.</P>
<P> </P>
<P>Like I said, probably not a lot of help.  But I wanted to give you at least her experience with it.  Good luck!!</P>
<P> </P>
 
T

tammykrumrey

Guest
<P>I am probably not going to be too much help here, because my daughter has been diagnosed with ABPA. BUT, it took a long time to get that diagnosis. She has only cultured Aspergillus maybe one or two times over the past few years. </P>
<P></P>
<P>But she has met every other diagnostic criteria. She has been positively diagnosed based on CXR, ige levels, Aspergillus specific ige levels (or whatever they are called). And based on the fact that her PFTs have dropped sharply, even after weeks of oral/inhaled antibiotics. Last fall they dropped from 100% to 46% three weeks after finishing two weeks of IV antibiotics. </P>
<P></P>
<P>She has been on VFend since last fall. I am not sure that it has helped because her ige levels have more than doubled since then. She was on Prednisone from Oct to Jan. And because her symptoms are back, she has been put back on Prednisone. We have tried wheening her off of them, but as soon as we dropped down to 10 mg/day, the symptoms returned. So she is back up to 20 mg/day, and is doing well. I agree with your clinic....I hate her being on it! And now I am worried about how we are going to get her off of it<img src="i/expressions/face-icon-small-sad.gif" border="0"> Last time she had no problems as she came off of them, this time, not so much.</P>
<P></P>
<P>Her doctor is also starting her on Zithromycin three times a week to help with inflammation. We will see how this is going to help.</P>
<P></P>
<P>Like I said, probably not a lot of help. But I wanted to give you at least her experience with it. Good luck!!</P>
<P></P>
 
T

tammykrumrey

Guest
<P><BR>I am probably not going to be too much help here, because my daughter has been diagnosed with ABPA. BUT, it took a long time to get that diagnosis. She has only cultured Aspergillus maybe one or two times over the past few years. </P>
<P></P>
<P>But she has met every other diagnostic criteria. She has been positively diagnosed based on CXR, ige levels, Aspergillus specific ige levels (or whatever they are called). And based on the fact that her PFTs have dropped sharply, even after weeks of oral/inhaled antibiotics. Last fall they dropped from 100% to 46% three weeks after finishing two weeks of IV antibiotics. </P>
<P></P>
<P>She has been on VFend since last fall. I am not sure that it has helped because her ige levels have more than doubled since then. She was on Prednisone from Oct to Jan. And because her symptoms are back, she has been put back on Prednisone. We have tried wheening her off of them, but as soon as we dropped down to 10 mg/day, the symptoms returned. So she is back up to 20 mg/day, and is doing well. I agree with your clinic....I hate her being on it! And now I am worried about how we are going to get her off of it<img src="i/expressions/face-icon-small-sad.gif" border="0"> Last time she had no problems as she came off of them, this time, not so much.</P>
<P></P>
<P>Her doctor is also starting her on Zithromycin three times a week to help with inflammation. We will see how this is going to help.</P>
<P></P>
<P>Like I said, probably not a lot of help. But I wanted to give you at least her experience with it. Good luck!!</P>
<P></P>
 
T

tammykrumrey

Guest
I forgot to say, that when she was tested for allergies a few years ago, she tested positive for aspergillus mold allergy!
 
T

tammykrumrey

Guest
I forgot to say, that when she was tested for allergies a few years ago, she tested positive for aspergillus mold allergy!
 
T

tammykrumrey

Guest
I forgot to say, that when she was tested for allergies a few years ago, she tested positive for aspergillus mold allergy!
 
C

carmick

New member
I have grown aspergillus on and off over the years but I don't have ABPA. If I had an exacerbation at the time, the docs treated both the mold and the MRSA because either one could be causing the symptoms. If you are still symptomatic after the antibiotics, trying antifungals seems like a logical next step.
 
C

carmick

New member
I have grown aspergillus on and off over the years but I don't have ABPA. If I had an exacerbation at the time, the docs treated both the mold and the MRSA because either one could be causing the symptoms. If you are still symptomatic after the antibiotics, trying antifungals seems like a logical next step.
 
C

carmick

New member
I have grown aspergillus on and off over the years but I don't have ABPA. If I had an exacerbation at the time, the docs treated both the mold and the MRSA because either one could be causing the symptoms. If you are still symptomatic after the antibiotics, trying antifungals seems like a logical next step.
 
K

KLeigh

New member
Hi!
My IGE level has often been elevated too, but my doctors haven't diagnosed me with APBA technically.
But what I do when my IGE is elevated is: Itraconazole for 3-6 months, i start with a high dose of steroids & taper off. I am consistently on 5 mg of Prednisone & I take 500mg Zithromax Monday, Wednesday & Friday.
Being on a low dose of steroids really isn't that bad. I don't have any side effects on 5 mg.
I saw an allergist & got prescribed Allegra to help with the wheezing from allergies in the air. They also recommended trying to get me started on Xolair shots but unfortunately my insurance didn't cover it (especially if you are not diagnosed with APBA) & it's EXTREMELY expensive. I'm still trying to fight that with the insurance company.
I know it's difficult when you are wheezing, but working out is the best to open your lungs.
I would find an extremely smart allergist (don't know where you are from but the one I had in Plano, TX was amazing) and work with him on trying to sort out the "asthma components" to your CF.
Good Luck!
Kathryn
 
K

KLeigh

New member
Hi!
My IGE level has often been elevated too, but my doctors haven't diagnosed me with APBA technically.
But what I do when my IGE is elevated is: Itraconazole for 3-6 months, i start with a high dose of steroids & taper off. I am consistently on 5 mg of Prednisone & I take 500mg Zithromax Monday, Wednesday & Friday.
Being on a low dose of steroids really isn't that bad. I don't have any side effects on 5 mg.
I saw an allergist & got prescribed Allegra to help with the wheezing from allergies in the air. They also recommended trying to get me started on Xolair shots but unfortunately my insurance didn't cover it (especially if you are not diagnosed with APBA) & it's EXTREMELY expensive. I'm still trying to fight that with the insurance company.
I know it's difficult when you are wheezing, but working out is the best to open your lungs.
I would find an extremely smart allergist (don't know where you are from but the one I had in Plano, TX was amazing) and work with him on trying to sort out the "asthma components" to your CF.
Good Luck!
Kathryn
 
K

KLeigh

New member
Hi!
<br />My IGE level has often been elevated too, but my doctors haven't diagnosed me with APBA technically.
<br />But what I do when my IGE is elevated is: Itraconazole for 3-6 months, i start with a high dose of steroids & taper off. I am consistently on 5 mg of Prednisone & I take 500mg Zithromax Monday, Wednesday & Friday.
<br />Being on a low dose of steroids really isn't that bad. I don't have any side effects on 5 mg.
<br />I saw an allergist & got prescribed Allegra to help with the wheezing from allergies in the air. They also recommended trying to get me started on Xolair shots but unfortunately my insurance didn't cover it (especially if you are not diagnosed with APBA) & it's EXTREMELY expensive. I'm still trying to fight that with the insurance company.
<br />I know it's difficult when you are wheezing, but working out is the best to open your lungs.
<br />I would find an extremely smart allergist (don't know where you are from but the one I had in Plano, TX was amazing) and work with him on trying to sort out the "asthma components" to your CF.
<br />Good Luck!
<br />Kathryn
<br />
 
J

jrotier

Guest
Thank you everyone!  I will be going to my clinic in a few weeks, and now I have something to bring to them!
 
J

jrotier

Guest
Thank you everyone! I will be going to my clinic in a few weeks, and now I have something to bring to them!
 
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