aspergillus

S

shinkdew

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

I am so glad that some one asked about this because I have been culturing it and my doctor didn't know if he should treat it. I don't know if I have ever had an ige level done. Is it a blood test? I go beck to the doctors on Tuesday and may ask more about having it treated.



I just came of IVs for staph and pseudo. My lungs are pretty clear but I still feel short of breath and tired. Could this be from the aspergillus? My FEV1 were a 60% and FEV were at 87% two weeks ago. I can't understand the shortness of breath and the reoccurring tiredness.

How do they find out if you are allergic to it?</end quote></div>

IGE is a blood test, it takes about a week to get the results.
 
A

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shinkdew</b></i>
IGE is a blood test, it takes about a week to get the results.</end quote></div>


There is also an aspergillus specific IgE that can be done. Doctors typically treat aspergillus with steroids and/or itriconozole.

A few years ago I cultured aspergillus for the first time. I had been having lots of sinus trouble and at one point I blew my nose and--I kid you not--bluish fuzz was what I saw in the tissue. I took it to my doctor and said "I think this is mold" and sure enough, it was.

They put me on Vfend and steroids, but my IgE level continued to stay very high. I developed lots of problems with CFRD because of the steroid, and other intestinal issues from the Vfend. Several different meds were tried in order to remedy the side effects, but they in turn, had their own side effects and I was MISERABLE. Eventually I said "enough" and refused to take the prednisone anymore. It was way more trouble than it was worth. To this day I'm exceptionally hesitant to try prednisone when the ABPA is flaring up.

My course of treatment for the ABPA is to have 20mL of liquid sporanox (my insurance won't pay for the pill form) 2x/day. I think for the most part this does well at keeping flare ups from being too much of an issue. Currently, my IgE level is up again, so the doc is keeping an eye on it. The biggest problems I have with the allergic reaction is that the flare ups are worse at particular times in my menstrual cycle. As a result, I have a whistly cough that sounds very much more like asthma than the "junky" CF pleghmy cough.

In addition to the sporanox, I do Advair and Spiriva. Not sure how well any of them work. I'm on so many meds that it's hard to tell which one specifically is keeping me in good shape. That's just more reason for me to stay compliant with EVERYTHING so that I don't get off track.

Here are some articles about ABPA and aspergillus as it pertains to CF. <UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10027433&dopt=Citation">ABPA Response to Itriconozole</a>
</UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.cochrane.org/reviews/en/ab002204.html">ABPA and Corticosteroids</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.library.nhs.uk/respiratory/ViewResource.aspx?resID=153174">Antifungal Therapies for Apergillus in CF Patients</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/full/17/5/1052">European Respiratory Journal-ABPA and CF</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.aspergillus.org.uk/secure/articles/pdfs/16738737.pdf#search=%22ABPA%20cystic%20fibrosis%22">PDF about Diagnosing ABPA in CF using IgE</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.findarticles.com/p/articles/mi_m0984/is_3_116/ai_56881515">Aspergilliosis in CF</a></UL>


-lightNlife
 
A

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shinkdew</b></i>
IGE is a blood test, it takes about a week to get the results.</end quote></div>


There is also an aspergillus specific IgE that can be done. Doctors typically treat aspergillus with steroids and/or itriconozole.

A few years ago I cultured aspergillus for the first time. I had been having lots of sinus trouble and at one point I blew my nose and--I kid you not--bluish fuzz was what I saw in the tissue. I took it to my doctor and said "I think this is mold" and sure enough, it was.

They put me on Vfend and steroids, but my IgE level continued to stay very high. I developed lots of problems with CFRD because of the steroid, and other intestinal issues from the Vfend. Several different meds were tried in order to remedy the side effects, but they in turn, had their own side effects and I was MISERABLE. Eventually I said "enough" and refused to take the prednisone anymore. It was way more trouble than it was worth. To this day I'm exceptionally hesitant to try prednisone when the ABPA is flaring up.

My course of treatment for the ABPA is to have 20mL of liquid sporanox (my insurance won't pay for the pill form) 2x/day. I think for the most part this does well at keeping flare ups from being too much of an issue. Currently, my IgE level is up again, so the doc is keeping an eye on it. The biggest problems I have with the allergic reaction is that the flare ups are worse at particular times in my menstrual cycle. As a result, I have a whistly cough that sounds very much more like asthma than the "junky" CF pleghmy cough.

In addition to the sporanox, I do Advair and Spiriva. Not sure how well any of them work. I'm on so many meds that it's hard to tell which one specifically is keeping me in good shape. That's just more reason for me to stay compliant with EVERYTHING so that I don't get off track.

Here are some articles about ABPA and aspergillus as it pertains to CF. <UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10027433&dopt=Citation">ABPA Response to Itriconozole</a>
</UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.cochrane.org/reviews/en/ab002204.html">ABPA and Corticosteroids</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.library.nhs.uk/respiratory/ViewResource.aspx?resID=153174">Antifungal Therapies for Apergillus in CF Patients</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/full/17/5/1052">European Respiratory Journal-ABPA and CF</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.aspergillus.org.uk/secure/articles/pdfs/16738737.pdf#search=%22ABPA%20cystic%20fibrosis%22">PDF about Diagnosing ABPA in CF using IgE</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.findarticles.com/p/articles/mi_m0984/is_3_116/ai_56881515">Aspergilliosis in CF</a></UL>


-lightNlife
 
A

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>shinkdew</b></i>
IGE is a blood test, it takes about a week to get the results.</end quote></div>


There is also an aspergillus specific IgE that can be done. Doctors typically treat aspergillus with steroids and/or itriconozole.

A few years ago I cultured aspergillus for the first time. I had been having lots of sinus trouble and at one point I blew my nose and--I kid you not--bluish fuzz was what I saw in the tissue. I took it to my doctor and said "I think this is mold" and sure enough, it was.

They put me on Vfend and steroids, but my IgE level continued to stay very high. I developed lots of problems with CFRD because of the steroid, and other intestinal issues from the Vfend. Several different meds were tried in order to remedy the side effects, but they in turn, had their own side effects and I was MISERABLE. Eventually I said "enough" and refused to take the prednisone anymore. It was way more trouble than it was worth. To this day I'm exceptionally hesitant to try prednisone when the ABPA is flaring up.

My course of treatment for the ABPA is to have 20mL of liquid sporanox (my insurance won't pay for the pill form) 2x/day. I think for the most part this does well at keeping flare ups from being too much of an issue. Currently, my IgE level is up again, so the doc is keeping an eye on it. The biggest problems I have with the allergic reaction is that the flare ups are worse at particular times in my menstrual cycle. As a result, I have a whistly cough that sounds very much more like asthma than the "junky" CF pleghmy cough.

In addition to the sporanox, I do Advair and Spiriva. Not sure how well any of them work. I'm on so many meds that it's hard to tell which one specifically is keeping me in good shape. That's just more reason for me to stay compliant with EVERYTHING so that I don't get off track.

Here are some articles about ABPA and aspergillus as it pertains to CF. <UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10027433&dopt=Citation">ABPA Response to Itriconozole</a>
</UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.cochrane.org/reviews/en/ab002204.html">ABPA and Corticosteroids</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.library.nhs.uk/respiratory/ViewResource.aspx?resID=153174">Antifungal Therapies for Apergillus in CF Patients</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.erj.ersjournals.com/cgi/content/full/17/5/1052">European Respiratory Journal-ABPA and CF</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.aspergillus.org.uk/secure/articles/pdfs/16738737.pdf#search=%22ABPA%20cystic%20fibrosis%22">PDF about Diagnosing ABPA in CF using IgE</a></UL>
<UL><a target=_blank class=ftalternatingbarlinklarge href="http://www.findarticles.com/p/articles/mi_m0984/is_3_116/ai_56881515">Aspergilliosis in CF</a></UL>


-lightNlife
 
K

kybert

New member
i hear you about the steroids lightnlife. im seeing my doctor on tuesday and he knows how i feel about the whole steroid issue. like you, it was more trouble than it was worth. i almost ended up in a wheelchair with my last course!
 
K

kybert

New member
i hear you about the steroids lightnlife. im seeing my doctor on tuesday and he knows how i feel about the whole steroid issue. like you, it was more trouble than it was worth. i almost ended up in a wheelchair with my last course!
 
K

kybert

New member
i hear you about the steroids lightnlife. im seeing my doctor on tuesday and he knows how i feel about the whole steroid issue. like you, it was more trouble than it was worth. i almost ended up in a wheelchair with my last course!
 
G

gsplover

New member
lightnlife-

That is interesting that you have flare ups during certain times of your menstrual cycle because I am having my period right now and my sinuses are driving me crazy. I am taking Claritin D and Flonase and not seeing any improvement. I have post nasal drip so bad that I have laryngitis. I have had night sweats for the past few nights which I am contributing to some type of fever. The only thing that I am coughing up has a brownish tint to it.

My lungs are very clear because I just came of a round of IVs and heavy airway clearance. Even though my lungs are clear, I am still getting short of breath. I am really frustrated. I feel like I have a head cold all the time and that I nee to continuously clear my throat.

I am going to ask my doctor to do an ige and look more into this.

Thank you both for all the information.
 
G

gsplover

New member
lightnlife-

That is interesting that you have flare ups during certain times of your menstrual cycle because I am having my period right now and my sinuses are driving me crazy. I am taking Claritin D and Flonase and not seeing any improvement. I have post nasal drip so bad that I have laryngitis. I have had night sweats for the past few nights which I am contributing to some type of fever. The only thing that I am coughing up has a brownish tint to it.

My lungs are very clear because I just came of a round of IVs and heavy airway clearance. Even though my lungs are clear, I am still getting short of breath. I am really frustrated. I feel like I have a head cold all the time and that I nee to continuously clear my throat.

I am going to ask my doctor to do an ige and look more into this.

Thank you both for all the information.
 
G

gsplover

New member
lightnlife-

That is interesting that you have flare ups during certain times of your menstrual cycle because I am having my period right now and my sinuses are driving me crazy. I am taking Claritin D and Flonase and not seeing any improvement. I have post nasal drip so bad that I have laryngitis. I have had night sweats for the past few nights which I am contributing to some type of fever. The only thing that I am coughing up has a brownish tint to it.

My lungs are very clear because I just came of a round of IVs and heavy airway clearance. Even though my lungs are clear, I am still getting short of breath. I am really frustrated. I feel like I have a head cold all the time and that I nee to continuously clear my throat.

I am going to ask my doctor to do an ige and look more into this.

Thank you both for all the information.
 
A

anonymous

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

My lungs are very clear because I just came of a round of IVs and heavy airway clearance. Even though my lungs are clear, I am still getting short of breath. I am really frustrated. I feel like I have a head cold all the time and that I nee to continuously clear my throat.

</end quote></div>

Same for me! It's just a little tickle cough and very thin post nasal drip (the kind I get with allergic rhinitis, i.e. hay fever) I can't really find anything that keeps it from happening, and my doc has advised me that things like sudafed or other allergy meds that dry me out could have an adverse effect on the CF problems.

However, I've noticed that as long as I'm continually snacking on something small like bite sized crackers and some juice or water, that keeps my throat occupied enough that I don't cough or clear my throat so much. And it's an added bonus to be taking in those extra calories with minimal effort. Win-win!

-lightNlife
 
A

anonymous

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

My lungs are very clear because I just came of a round of IVs and heavy airway clearance. Even though my lungs are clear, I am still getting short of breath. I am really frustrated. I feel like I have a head cold all the time and that I nee to continuously clear my throat.

</end quote></div>

Same for me! It's just a little tickle cough and very thin post nasal drip (the kind I get with allergic rhinitis, i.e. hay fever) I can't really find anything that keeps it from happening, and my doc has advised me that things like sudafed or other allergy meds that dry me out could have an adverse effect on the CF problems.

However, I've noticed that as long as I'm continually snacking on something small like bite sized crackers and some juice or water, that keeps my throat occupied enough that I don't cough or clear my throat so much. And it's an added bonus to be taking in those extra calories with minimal effort. Win-win!

-lightNlife
 
A

anonymous

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

My lungs are very clear because I just came of a round of IVs and heavy airway clearance. Even though my lungs are clear, I am still getting short of breath. I am really frustrated. I feel like I have a head cold all the time and that I nee to continuously clear my throat.

</end quote></div>

Same for me! It's just a little tickle cough and very thin post nasal drip (the kind I get with allergic rhinitis, i.e. hay fever) I can't really find anything that keeps it from happening, and my doc has advised me that things like sudafed or other allergy meds that dry me out could have an adverse effect on the CF problems.

However, I've noticed that as long as I'm continually snacking on something small like bite sized crackers and some juice or water, that keeps my throat occupied enough that I don't cough or clear my throat so much. And it's an added bonus to be taking in those extra calories with minimal effort. Win-win!

-lightNlife
 
G

gsplover

New member
My sinuses are also always bloody. They are like this all the time whether I am taking flonase or not. Do you have it in your sinuses and lungs?
 
G

gsplover

New member
My sinuses are also always bloody. They are like this all the time whether I am taking flonase or not. Do you have it in your sinuses and lungs?
 
G

gsplover

New member
My sinuses are also always bloody. They are like this all the time whether I am taking flonase or not. Do you have it in your sinuses and lungs?
 
You must log in or register to reply here.
Top