Hi. Jacmidlands over on the BLF forum replied to a post about my 12 yo daughter pointing me in this direction, and I’m hoping some of you can help. She has fairly severe cystic fibrosis, and we’re unfortunately very familiar with bacterial infection as a result, but fungal issues are relatively new. We moved to fall under a highly specialist hospital last summer, and following an empirical, month long course of posaconazole they gave her in an effort to resolve the prolonged, *really* bad spell of chest health we moved to them with (that worked absolute wonders), she’s subsequently had a couple of growths of exophiala dermatitidis from sputum. I’ve just found out that the most recent was mid-admission in Feb, where she was symptomatically worse on discharge despite getting her resident pseudomonas and another bacteria tamed a bit (A.Beijerinckii), and she didn’t improve at all until I politely stamped my feet in March and asked them to consider trying posaconazole again: she started to improve within 5 days. After a month of posa, she’s probably 75% better than where she was, but still not close to well baseline, and we now know about the second exophiala growth, so it’s been suggested that alongside her more usual antibiotic IVs, we should really get her in and give her a blast with amphotericin to try and get whatever fungus/fungi she may have under better control, if not eradicated completely. I’m wording it like that because the docs aren’t actually committing to the exophiala being the problem, only that there is very clearly a fungal issue that we need to get on top of.
All of my reading so far suggests that this drug can really make you feel poop, to put it nicely. We’ve been really lucky in terms of side-effects to date, despite the dozens of courses of IVs she’s had and the huge quantities of different meds she’s been given over the years, but I wanted to try and find out the consensus view on how accurate the literature is from people who have actually taken amphotericin themselves. By which I mean, whilst I appreciate everyone is different, is it generally true that most people feel naff taking this? What are the main ways people feel naff when taking this? And any other tips or advice you may have if the odds are that she’s going to have two weeks of feeling pretty crappy would be extremely welcome!
Many thanks in advance.
Charlie, Dad to E
