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Hi I'm new here and I have BE, mac, aspergillosis and abpa. My ID is treating both at the same time. Most of my side effects are from vfend. I only do ethambutol and azithromiacin, I couldn't tolerate any rif drugs. My ID prescribed Arikayce but I am waiting until I can complete the 10 day program at NJH in June. I live in California, but I feel like it's worth the time etc to get answers specific to my situation.
Replies to "Hi I'm new here and I have BE, mac, aspergillosis and abpa. My ID is treating..."
I also have BE, MAC, and ABPA, as well secondary adrenal insufficiency from years of treating my asthma with steroids. I also live in California!
I am currently on a biologic, Fascenra, to suppress my asthma reactivity. Also Spireva and a steroid inhaler. I'm not sure these meds have been effective. What has been effective is my anti-fungal course, itraconazole 200 mg x 2 - I've been healthier this year than I have been in a very long time. I'm not sure why my pulmonologist was reluctant to endorse the antifungal, but for me it has been a complete game changer. I also nebulize levabuterol and 7% saline twice a day, and I really feel the difference if I neglect those treatments. My ID doc has not pushed me to address the MAC, I presume because my ABPA has been uncontrolled and I've been hospitalized with pneumonia/sepsis/fungus five times in the past two years.
At some point, once I've stabilized (now dealing with another bout of steroid induced adrenal insufficiency), I will tackle the MAC problem. It's my understanding that it's a slow growing bug and it's my hope that there could be new treatments online in the next year or so. I also just don't feel strong enough to deal with the side effects of the BIG 3.
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Good morning. Do you mind sharing the side effects from the vfend and how long that is prescribed for? I’m about 7 weeks into Cresemba for the aspergillis and it’s been rough on top of the daily big 3. Good luck with everything. Hope you can clear soon. Also agree with you about a trip to NJH from California as well - have definitely considered that myself.