expereince of taking Voriconazole

I started Voriconazole 6 days ago and only on the first dose I felt a little nauseated but other than that I don't even notice I am taking it, I will be getting my liver enzymes checked every 6 weeks for the 6 month duration.

I am on my second 12 week round of Voriconazole ....first time when I was diagnosed with MAC 2 years ago and now after being off MAC meds but still having a sketchy CT scan which led to a bronchoscopy which found aspergillus. The only bad reaction I've had from Voriconazole is not being able to eat 1 hour before and after taking it! Good luck to you!

@tconz and @oaktree ---

Thank you both for sharing your experiences with me. A long road to go, best luck to all of us.

Ling

I'm on month 20 as I have a fungal ball. I do very well on voriconazole other than sensitive skin that peels off easy and burns. I have added wide brimmed hats, long sleeves with sun protection, lip protection, and sunscreen.

Thanks Rick for sharing. I see that sensitive skin to the sun is a common side effect. It will be a challenge for me. I am a person who never gets enough sun.
Best regards!

Ling

Hi Ling. I was on Vfend for about a year for Aspergillosis fumagatos which was diagnosed via robotic lung surgery. The side effect I had every day for months was my eyes got blurry so I couldn’t read or drive for at least an hour and everything was kind of yellow toned. That subsided after several months. I had to go every month for bloodwork to check the level of Vfend in my blood. Cresemba is a drug for aspergillosis with fewer side effects but not covered by some insurance. It is a megabucks drug. Aspergillosis is treatable and not something to be taken lightly. Vfend will cure it. It’s not like the Big 3 for MAC. Aspergillosis is much easier to treat. Wishing you well. Irene5

Hi Irene5,
Thank you so much for sharing your experiences with Voriconazole. Several months of side effects like that, what an ordeal. I started it a couple days ago, so far, I don't feel anything yet, it might build up, right? My doctor asked me to have a blood test in a few days to check how I am doing with this drug. I don't understand why we get this fungus. It doesn't seem that a lot of people have it. Maybe there is something besides bronchiectasis that makes us vulnerable to. Thank you again and you take care!
Ling

@irene5 A little unrelated but I am curious if the aspergillosis was detected in a routine sputum sample? Or only from bronchoscopy? Is bronchoscopy what you mean by robotic lung surgery? Thank you!

Thank you for your question. Unfortunately, I am not a spitting kind of gal so bronchoscopy is the only way to find anything with me. I had had MAC for years and it “appeared” to worsen with more and larger nodules so a minimally invasive robotic lung bronchoscopy was scheduled to biopsy a few nodules to see what exactly was growing in my lungs. After years of treatment for MAC ( Big 3 and Arikayce), the MAC was finally gone, but a new invader had taken up residence- aspergillosis fumagatos. Ah the joy of it all! The gift that keeps on giving. Definitely a no bueno, but I have wonderful doctors at UMASS, Worcester, Ma. who put me on a long course of Vfend. ( irene5)

Ling, what I have found in life is that asking the “why” of anything will just make me crazy, so I research everything. I guess it comes down to genetics, body type, environment, and probably diet- the greatest being genetics and body type. I say that because my brother and I had the same parents but grew up in different environments after age seventeen, and his economic status was way better than mine - yet we have ended up sharing similar but not identical illnesses. What I also discovered that I did not know was the down side of steroid inhalers and steroids of any kind which is that they increase your risk of getting infections. Thank you Rick for that valuable piece of information and article. The side effect of my eyes going wonky everyday didn’t hurt Ling . It was just annoying for a bit of time so I couldn’t drive or read till it passed. I was ok with that. The fact that you don’t have side effects is a good and wonderful thing! ( irene5)