ABPA and your treatment.

S

sunflower

New member
Hi
I am extremely at a low and disappoointed with my treatment. I have been asking my Consultant for Xolair for approx two half years. My treatment is Steroid IVS for three days Sponax - anti fungal tablets for six.
Anyway this is his third attempt to get my IGE level down but, not happening and to top if off I ended up in AE with diarrohea and dehydration Dec.
Jan Last month I was ill on the treatment and now I am sick again with server diarrohea, cramping and in bed for two weeks. If my IGE level isn'tgoingdown he wants to go again in ten days.
Is this not madness? And I cannot do this treatment anymore Im sure this isn't good for my body. Oh I only seem to get a raise IGE Level OCT to April and it settles down.
Now compair to others my IGE level is only 1,200 and cause me a wheeze and diffcult to breath.
I have an appointment to see him on Friday and I am not leaving his office until he decides XOlair. He said Xolair is licence for Ashtma and I'm saying back to him "I have Asthma". My diet is very good and don't eat sugary, processed foods...
He says "oh side effects to CF", I replied "yes side effects with every drug please give it to me". Beside I know people on it in America. He didn't.
Please help me in what I should say to convience him and how your treatment is going on with Xolair. I cannotfiringhim because limited on CF consultants in my country.
Thank you ,
Sunflower
41yr old
ABPA, Asthma, Bronchi
Psuedomonas.
 
S

sunflower

New member
Hi
I am extremely at a low and disappoointed with my treatment. I have been asking my Consultant for Xolair for approx two half years. My treatment is Steroid IVS for three days Sponax - anti fungal tablets for six.
Anyway this is his third attempt to get my IGE level down but, not happening and to top if off I ended up in AE with diarrohea and dehydration Dec.
Jan Last month I was ill on the treatment and now I am sick again with server diarrohea, cramping and in bed for two weeks. If my IGE level isn'tgoingdown he wants to go again in ten days.
Is this not madness? And I cannot do this treatment anymore Im sure this isn't good for my body. Oh I only seem to get a raise IGE Level OCT to April and it settles down.
Now compair to others my IGE level is only 1,200 and cause me a wheeze and diffcult to breath.
I have an appointment to see him on Friday and I am not leaving his office until he decides XOlair. He said Xolair is licence for Ashtma and I'm saying back to him "I have Asthma". My diet is very good and don't eat sugary, processed foods...
He says "oh side effects to CF", I replied "yes side effects with every drug please give it to me". Beside I know people on it in America. He didn't.
Please help me in what I should say to convience him and how your treatment is going on with Xolair. I cannotfiringhim because limited on CF consultants in my country.
Thank you ,
Sunflower
41yr old
ABPA, Asthma, Bronchi
Psuedomonas.
 
D

dbsholes

New member
Sunflower,

My ABPA clears up with 10 - 14 days of oral Voriconazole (anti-viral). It's a strong pill and I have to lie down for about an hour after I take it (vision issues and dizziness). But it does the job. And for an anti-viral those side-effects are minor. Perhaps ask about it.

What country are you in?

David Sholes
Bennington Vermont
 
D

dbsholes

New member
Sunflower,

My ABPA clears up with 10 - 14 days of oral Voriconazole (anti-viral). It's a strong pill and I have to lie down for about an hour after I take it (vision issues and dizziness). But it does the job. And for an anti-viral those side-effects are minor. Perhaps ask about it.

What country are you in?

David Sholes
Bennington Vermont
 
P

phutton

New member
I understand how you feel!! My ABPA has wreaked havoc on my health. I have been on every antifungal and round and rounds of steroids and nothing worked. I ended up in the hospital after allergic reaction to antifungal medicines. I was on Caspofungin IV for 6 months and Steroids for 4 months. My dr didn't want to do Xolair, so I went to another non cf allergist. He started me on it right away!! It is the best thing I have done. I wouldn't take no for an answer. If your dr says no find someone else. You know your body better than anyone.

Good Luck
 
P

phutton

New member
I understand how you feel!! My ABPA has wreaked havoc on my health. I have been on every antifungal and round and rounds of steroids and nothing worked. I ended up in the hospital after allergic reaction to antifungal medicines. I was on Caspofungin IV for 6 months and Steroids for 4 months. My dr didn't want to do Xolair, so I went to another non cf allergist. He started me on it right away!! It is the best thing I have done. I wouldn't take no for an answer. If your dr says no find someone else. You know your body better than anyone.

Good Luck
 
P

phutton

New member
I understand how you feel!! My ABPA has wreaked havoc on my health. I have been on every antifungal and round and rounds of steroids and nothing worked. I ended up in the hospital after allergic reaction to antifungal medicines. I was on Caspofungin IV for 6 months and Steroids for 4 months. My dr didn't want to do Xolair, so I went to another non cf allergist. He started me on it right away!! It is the best thing I have done. I wouldn't take no for an answer. If your dr says no find someone else. You know your body better than anyone.

Good Luck
 
P

phutton

New member
I understand how you feel!! My ABPA has wreaked havoc on my health. I have been on every antifungal and round and rounds of steroids and nothing worked. I ended up in the hospital after allergic reaction to antifungal medicines. I was on Caspofungin IV for 6 months and Steroids for 4 months. My dr didn't want to do Xolair, so I went to another non cf allergist. He started me on it right away!! It is the best thing I have done. I wouldn't take no for an answer. If your dr says no find someone else. You know your body better than anyone.

Good Luck
 
H

Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dbsholes</b></i> And for an anti-viral those side-effects are minor.</end quote>

Anti-viral? Voriconazole is an antifungal agent.
 
H

Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dbsholes</b></i> And for an anti-viral those side-effects are minor.</end quote>

Anti-viral? Voriconazole is an antifungal agent.
 
S

sunflower

New member
Hi David,
I should have said the Antifungal tablet is "itraconzonle" or Sponax = 600mg a day
(Dr. prescribed 800mg and didnt take it because two yearsvery sick)
This time around I got through three weeks 21 days and had to stop. However, I WASn't taking the tablets in Nov just three days IV steroids and ended up in AE. Put on a drip and kept in for six weeks. WOUld the steroids be doing??? Or another problem.
Yes my eyes do act too and would have to lie down. My IGE keeps going up since starting IV's Nov, again Jan and then ten days later . I AM due another blood test at the end of this week but, I know my IGE level has risen again in how I am feeling.
I have a high threshold of pain but this was just unbelieveable remindedme when I was admitted inDec.
 
S

sunflower

New member
Hi David,
I should have said the Antifungal tablet is "itraconzonle" or Sponax = 600mg a day
(Dr. prescribed 800mg and didnt take it because two yearsvery sick)
This time around I got through three weeks 21 days and had to stop. However, I WASn't taking the tablets in Nov just three days IV steroids and ended up in AE. Put on a drip and kept in for six weeks. WOUld the steroids be doing??? Or another problem.
Yes my eyes do act too and would have to lie down. My IGE keeps going up since starting IV's Nov, again Jan and then ten days later . I AM due another blood test at the end of this week but, I know my IGE level has risen again in how I am feeling.
I have a high threshold of pain but this was just unbelieveable remindedme when I was admitted inDec.
 
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