Voriconazole

[PeteD]

Hi. I'm new to this community. I have had pulmonary aspergillosis for past couple of years and been on Iraconazole. Now I've been switched to Voriconazole which, after the first few days seems to have no side effects. Did have a few flashing lights in my eyes for first couple of days. Are there any sufferers that are on Voriconazole and any advice on precautions, side effects or how they find the medication. Thank you in advance.

[Southernbell1414]

I had invasive aspergillosis in my sinus cavity a couple years back and between all the surgeries and being allergic to amphotericin b I was placed on voriconazole. I didn't really have side effects while on it but after I stopped taking it I did get the creepy crawly feeling on my skin and became easily aggitateted which is not me at all im very laid back n easy going. Other then that though nothing else.

[PeteD in reply to Southernbell1414]

Hi- thanks for your reply and reassurance regarding side effects whilst taking Voriconazole. I'll look forward to the creepy crawly feeling if I ever get taken off.

[nikki5876]

Whats the reason for the change in medication, I have been on Itraconazole now for over 12 months and I have been told to continue on this until October this year.

[PeteD in reply to nikki5876]

Hi Nikki

I was on Itroconazole for 2 years and even though it was stabilizing further growth it was having no impact. Was then referred to National Aspergillus Center Manchester who have put me on Voriconzole.

[nikki5876]

I seem to be ok while religiously taking the Itraconazole but soon as soon as I miss a dose I know about it, so think I may be on them for a long time if not indefinetly

[sarahdave]

Hi our daughter age 12 has been on Voriconazole for the last 4 months and her lung function has increased 20% after 4 years of steroids and Itraconizole. We have to pay for the drug but it's so worth it. For the first 24 hours she did hallucinations but thankfully that settled down. I hope it's as effective for you

[Lutonian in reply to sarahdave]

Glad to hear that your daughter has settled down on different drug and is seeing a benefit,but can't believe you have to pay for it: I know she's worth it but the NHS should cover anything a child needs.

[PeteD]

Hi Sarahdave

Thanks for the reply. Good to hear your daughter is improving. I'm also shocked to hear you have to pay for Voriconazole. I know its listed by NHS as only being prescribed by a specialist, but thought if your daughter was on Itraconazole for 4 years she would have been referred to a specialist.

[fcag2001]

Be careful to monitor your eyes V gave me cataracts now all sorted but a problem for a few years with vision and balance . Maybe I was unlucky as I persevered too long with it . I am now on itraconazole and No steroids and all is much better. Prof Denning in Manchester said avoid steroids if possible and I have been so much better with his regime of meds so watch out. If you are with himThen you will be well Monitored . Good luck avoid doing any gardening if possible and take a daily walk at least half an hour to keep your basic health good . Good luck .

[GAtherton Administrator Fungal Infection Trust]

Lots more advice from fellow patients here facebook.com/groups/aspergi...

Lots more information on aspergillosis here nacpatients.org.uk/treatment

All groups mentioned here are moderated by the National Aspergillosis Centre, UK

[shirleyi]

Hi. I am new here also. Been on the Voriconazole for 2 days now and I have the flashing lights and kind of a reddish tint to things sometimes. Don't know but have not been able to sleep at night after taking the night dose. Makes me feel cold. WOW powerful stuff,

[PeteD]

Hi Shirley. Good to hear from someone whose new to Voriconazole. I had flashing lights first 3 days but now disappeared. I get a bit of head fuzziness after my morning dose but even that has now worn off. Big problem for me is not letting your skin get exposed to the sun especially on a day like today at 27 degrees here. Hopefully your side affects will ease off over time

[Pooeysuey]

Can I ask why you were changed over?