So how long will you have to be on Itraconazole Sarah? and what form is it in when you take it? pill? IV? How long have you been on it? Any side effects? How does your doc. feel sure that he is treating your aspergillus? are you able to rid the aspergillus with this medicine?
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Hypertonic Saline and hemoptysis
- Thread starter Diane
- Start date
Lauren-
I have been on this higher dose of Itraconazole for a year, yes daily. The can tell that it is working because of my sputum cultures. I take a sputum everytime I feel more congested, and I am not culturing Aspergillus. I have had the Aspergillus problem for probably 10 years, and we never treated it daily only when I would get bad bleeds or cultured it more than once. Blood tests let them know that my liver levels are still in a good range and let them know the level of Itra is a good working level. Between Sputum culture is the best way to tell that it works, and over all I have felt much better. My current dose is 300 mg twice a day - I used to do 200 mg twice a day but I still had problems. Then in June of 2005 right before our wedding I did Amphiteracin B (Ambizome) anti-fungal as outpatient through infusion therapy for a couple weeks and after that started the itra 300 mg and since then I have not cultured Aspergillus. THe IV drugs sucked, I couldn't eat I had to take Benadryl while on it, most people react to it. BUt the end result was worth it.
Whew that was wordy, hope that answers your questions, if I missed anything ask again.
I have been on this higher dose of Itraconazole for a year, yes daily. The can tell that it is working because of my sputum cultures. I take a sputum everytime I feel more congested, and I am not culturing Aspergillus. I have had the Aspergillus problem for probably 10 years, and we never treated it daily only when I would get bad bleeds or cultured it more than once. Blood tests let them know that my liver levels are still in a good range and let them know the level of Itra is a good working level. Between Sputum culture is the best way to tell that it works, and over all I have felt much better. My current dose is 300 mg twice a day - I used to do 200 mg twice a day but I still had problems. Then in June of 2005 right before our wedding I did Amphiteracin B (Ambizome) anti-fungal as outpatient through infusion therapy for a couple weeks and after that started the itra 300 mg and since then I have not cultured Aspergillus. THe IV drugs sucked, I couldn't eat I had to take Benadryl while on it, most people react to it. BUt the end result was worth it.
Whew that was wordy, hope that answers your questions, if I missed anything ask again.
Sarah, Thanks for the PM on this. So let me make sure I understood this correctly.. You cultured Aspergillus for 10 straight years. There was no treatment given until your hemoptysis started to get really out of control and your doctor decided to give it a go at treating the fungus with itraconazole to see if it would cut back on the hemoptysis. 20/20 hindsight do you wish you'd done the intra. earlier? I'm assuming that you've been dealing with hemoptysis for years and that it only in recent years got to the point of requiring embolizations, etc.
If you can't tell I'm trying to figure out if I should request Itra. I have light hemoptysis but its just about daily which is frustrating, annoying and scary. I'm also, like you, not allergic so I have not been put on itra. as my doc. feels that you only treat it if the patient has ABPA (Alergic to Aspergillus).
Thanks for your help!
If you can't tell I'm trying to figure out if I should request Itra. I have light hemoptysis but its just about daily which is frustrating, annoying and scary. I'm also, like you, not allergic so I have not been put on itra. as my doc. feels that you only treat it if the patient has ABPA (Alergic to Aspergillus).
Thanks for your help!
I use the H S 7% , but I only use
2 ml a Neb at 2 to 3 times a day
it works and has not caused any
other problems,
One Tip: If You drink coffee or Hot Tea
it is good to have a cup when You do
the Neb because the HS taste like nasty
sea water, It will make you gag a bit , but it
also Works !! But it will take a little time
to get used to it , But again, it works.
I Neb a bit and stop and have a sip of coffee
or hot tea and a cough.
2 ml a Neb at 2 to 3 times a day
it works and has not caused any
other problems,
One Tip: If You drink coffee or Hot Tea
it is good to have a cup when You do
the Neb because the HS taste like nasty
sea water, It will make you gag a bit , but it
also Works !! But it will take a little time
to get used to it , But again, it works.
I Neb a bit and stop and have a sip of coffee
or hot tea and a cough.
Lauren -
Over the ten years we had treated the Aspergillus, but to only have it return - I was never on anything long term. It seems once they cleared out the Apergillus the PA would pop up, and visa versa. BUt having finally gotten it under control this last year has really made a difference. I never had to have any cauterizing or the other things they list to have the bleed stopped, they always stopped on their own, it took a few days sometimes, but part of it was I was to stubborn to go to the hospital - cause of course it always happened on the weekend and you cannot drag me to the ER unless I can't breath. It might be for you a month long treatment might clear it up enough to not have it return or for it to stay away for an extended amount of time - isn't everything trial and error with us. That's my theory.
Yeah I wish we had come up with this years ago, but as you say hindsight is 20/20.
Have you searched the internet regarding Aspergillus in CFers? I haven't but I believe my nurse said that either this past year or the previous one at the CF conference it was a discussion for the reasons as you are having. Some Docs don't find treatment necessary, and they don't think it causes lung damage. I guess I would go ahead and suggest trying it, what does it hurt - if it doesn't work, then it doesn't work, but give it time get into your system - it builds up.
If your docs are interested or want to know more they can contact my CF center. If that is the case let me know and I will give you the numbers to contact.
I wish you luck, Please keep me posted. Sarah
Over the ten years we had treated the Aspergillus, but to only have it return - I was never on anything long term. It seems once they cleared out the Apergillus the PA would pop up, and visa versa. BUt having finally gotten it under control this last year has really made a difference. I never had to have any cauterizing or the other things they list to have the bleed stopped, they always stopped on their own, it took a few days sometimes, but part of it was I was to stubborn to go to the hospital - cause of course it always happened on the weekend and you cannot drag me to the ER unless I can't breath. It might be for you a month long treatment might clear it up enough to not have it return or for it to stay away for an extended amount of time - isn't everything trial and error with us. That's my theory.
Yeah I wish we had come up with this years ago, but as you say hindsight is 20/20.
Have you searched the internet regarding Aspergillus in CFers? I haven't but I believe my nurse said that either this past year or the previous one at the CF conference it was a discussion for the reasons as you are having. Some Docs don't find treatment necessary, and they don't think it causes lung damage. I guess I would go ahead and suggest trying it, what does it hurt - if it doesn't work, then it doesn't work, but give it time get into your system - it builds up.
If your docs are interested or want to know more they can contact my CF center. If that is the case let me know and I will give you the numbers to contact.
I wish you luck, Please keep me posted. Sarah