I have had some amazing incites about dealing with my ABPA and am so grateful that I have found this site. I am on itraconazole and Prednisone. I was given a short term Voriconazole (4wks) and worked down from a high dose Pred. Asthma, wheezing and congestion returned. Now on Itraconazole and down to 20 mg. Pred. (third high to lower dosage)...realize that should not have been taken off Pred. altogether until on anti-fungal at least 3 to 6 months with levels showing it is working. I just had my levels done after 1 month...and have not seen results yet but my breathing is better. I feel as if my Pulmonologist is just not that familiar with this disease and he has been amazing treating my bronchiectasis but I feel I need a specialist in managing this difficult balance. I live in the US but would come to Manchester ... is there a procedure that is required to do this. It would ease my mind because I am daily realizing things were not done properly for my treatment...I think I am on top of it now but would feel better speaking with experts in the field.
Please advise and thank you.
Hannah
Written by
HannahBenson
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The National Aspergillosis Centre is an NHS centre and as such is focussed on treating people who are part of its scope of care - mostly UK citizens. We do not currently run a private clinic.
That said if your medical doctor can present us with a detailed referral that gives us evidence that you may have aspergillosis (usually requires radiological evidence, IgG & IgE serology and a detailed medical history) then we are allowed to consider seeing a few cases if the cost to the NHS is paid before we see you.
Thank you for this information. I believe the itraconazole is finally taking effect (7wks) but it is good to know that if the balancing act that I am going through just is not having any success...I would possibly have this as an option. I will be getting a flu shot this week and have heard from several in this group that they too are getting one as well so that eases my mind. My blood levels for itraconazole have been taken (do not have result) but I had already been on the drug for a month...so I wonder if I should have had one in the beginning of the treatment. These are the things that are bothersome but I imagine that there is a gage of efficacy that needs to be reached that would show up regardless. Thank you again for answering my questions.
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Chronic pulmonary aspergillus
Itraconazole seems to have stopped working
Aspergillosis
Desperate for diagnosis!