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MAC & Bronchiectasis | Last Active: 2 days ago | Replies (35)

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@hbcupcake

I have been taking vfend since Feb 21st, I was at 300mg 2x a day, 2 weeks ago I went up to 400 2x a day. The side effects I've had are photosensitivity, confusion/forgetfulness, and seeing things about an hour after the dose. In the hospital I was hallucinating when I they would give it to me but I have no idea if that was from drug interactions. I also get sun burnt easily, 10 mins in front of the hospital window and I was already red, so I stay covered.

When I say hallucinating I mean very slight visual stuff, someone would be sitting in front of me and it looked like I needed to clear the air, similar to someone vaping. At home it has not done that. I get flashes of lines, shapes etc if I look at my tv or phone when it's off. That goes away fast (about an hour). As far as confusion sometimes I will be talking and completely forget what I'm about to say, and go into another room but forget why I went there. I've done that occasionally before, but this is several times a day. In all I think it's a great drug and clearing up my aspergillosis well.

I believe the standard treatment is 4-6 months, but varies because everyone has different conditions. Because I'm doing that and mac treatment I may have to take it longer.

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Replies to "I have been taking vfend since Feb 21st, I was at 300mg 2x a day, 2..."

hbcupcake, it sounds to me like you might have an extremely high dosage of vfend. You should have regular blood tests of the voriconazole level in your blood. I added a photo of mine with a good 3.0 level. I am 175 pounds and take 200mg 2X daily. When was your last test and what was the level?
~Rick

That does sound like pretty intense side effects and a long time to stay on the meds. Clearly we want to get rid of the aspergillis but always a trade off. I was initially told 12 weeks on Cresemba but will run another set of labs and see my ID Dr next month.