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Aspergillus

M

Marjolein

New member
I was diagnosed with Aspergillus 4 weeks post transplant.
I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.

They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.
 
M

Marjolein

New member
I was diagnosed with Aspergillus 4 weeks post transplant.
I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.

They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.
 
M

Marjolein

New member
I was diagnosed with Aspergillus 4 weeks post transplant.
I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.

They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.
 
M

Marjolein

New member
I was diagnosed with Aspergillus 4 weeks post transplant.
I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.

They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.
 
M

Marjolein

New member
I was diagnosed with Aspergillus 4 weeks post transplant.
<br />I was put on Itraconazole (an anti-fungal) and was on that for 3 months. My next bronch was negative for Aspergillus.
<br />
<br />They did tell me that when they found it they only found a little but wanted to treat it aggresive because I was very immunosuppuressed. A few weeks into the treatment the dose was brought down by half because my kidneys started to act up. Think I was on 2x 200mg and went down to 2x 100 mg.
 
M

mom2lillian

New member
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.

My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).

You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.

MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.

Sorry you are having to go through this
 
M

mom2lillian

New member
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.

My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).

You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.

MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.

Sorry you are having to go through this
 
M

mom2lillian

New member
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.

My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).

You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.

MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.

Sorry you are having to go through this
 
M

mom2lillian

New member
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.

My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).

You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.

MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.

Sorry you are having to go through this
 
M

mom2lillian

New member
You dont have to culture aspergillus to have ABPA, that is a misconception--many criteria on the internet describe it as 'when cultured in the airways' but from my understanding you can also just be very allergic to it and since it is all around, every time it rains, wet paint, what have you it can do the same thing.
<br />
<br />My experience was atypical in that my lungs were fairly high FEV1 still and I just kept getting bleeding issues and then they ran my numbers and saw and IGE>1000. The standard treatment is steroids until your numbers are reduced by 50% or more and then of course if you culture then an anti-fungal (of if they cant catch it but think its a possibility like you Jen).
<br />
<br />You may also want to look at any other irritants you may be exposing yourself to since the steroids are what is helping.
<br />
<br />MY experience was after the steroids my IGE went to 250-350 range and has stayed there for past 6 years. I went on xolair which you can read about in my blog here
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-adventure.html
">http://cftoo.blogspot.com/2008...xolair-adventure.html
</a><br /><a target=_blank class=ftalternatingbarlinklarge href="http://cftoo.blogspot.com/2008/12/xolair-miraculous.html">http://cftoo.blogspot.com/2008...xolair-miraculous.html</a> and it has been WONDERFUL.
<br />
<br />Sorry you are having to go through this
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>


Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote></div>

my pleasure. i'm so glad you found it helpful
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>


Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote></div>

my pleasure. i'm so glad you found it helpful
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>


Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote></div>

my pleasure. i'm so glad you found it helpful
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>


Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote>

my pleasure. i'm so glad you found it helpful
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kirstynkoffs</b></i>
<br />
<br />
<br />Saveferris: I found your blog really useful - thankyou so much for sharing all your knowledge!</end quote>
<br />
<br />my pleasure. i'm so glad you found it helpful
 
M

musclemania70

New member
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.
 
M

musclemania70

New member
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.
 
M

musclemania70

New member
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.
 
M

musclemania70

New member
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.
 
M

musclemania70

New member
saveferris2009, this may be personal but I was wondering (if you want to answer); do you pay out of pocket every time you visit a doctor out of network of does your insurance cover these visits out of your area as an in-network provider(when you visit other sites)? Just wondering.
 
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