What was your experience with Voriconazole?
Hi everyone,
It seems that some of you were on Voriconazole because of Aspergillus infection. Did you have any side effects? Anything regarding this drug treatment and infection experience you want to share?
I had my bronchoscopy last Wednesday, some test results including a fungus test will be back in a few weeks, My pulmonologist wants me to start Voriconazole, he doesn't want to wait based on the ct scan and the exam he did via bronchoscopy. He seems certain it is an aspergillus infection.
Thank you for any tips you can offer.
Ling
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Irene- Thank you for your sharing your experiences and your time that you gave in writing your reply. I understand about the number 10 child....my sister, the baby of the family, is 13 years younger than I and I can say that my parents would have said the same thing...a challenge. My major was Kindergarten Primary Ed. I only taught for a short time. Loved the children and our classroom but beyond our classroom doors....not so much. One of the words I had 'plastered' on a section of our classroom walls was the word PERSEVERNCE. Hopefully the children internalized the meaning of it. Perseverence is what it takes for most everything in life. Thank you for sharing your experience at the time of your confirmation of BE and then with the antibiotics. Us humans have many emotions and it is good to share such moments with others to show we are not alone in our ways of dealing with the news of...'You have BE."
Yes, I tell myself often how fortunate I am for many reasons..... with one being my having been diagnosed by my PCP (8/2022) before the BE was way out of control. I also knew something was wrong a few years before my BE diagnosis and kept making appointments with my PCP to the point that I thought he might start thinking I was a hypochondriac. As of this moment in time I feel well, sleeping well and good appetite in spite of the LPR/Hiatal Hernia /Eczema and BE that all were diagnosed about the same time. Probably, possibly, all related back to one thing....acid. With having this wonderful site to go to I have learned much and, as a matter of fact, in one of your previous replies to me you helped me realize how the LPR/Hiatal Hernia and the BE all could be related to my need to constantly clear my throat of mucus and especially after I eat. I have since read that the hiatal hernia can/does cause overproduction of mucus. Yes, if I do hear those words... 'time to consider the big 3' I, myself, will consider all that one should take into account and consideration in formulating the decison to begin taking the antibiotics. P.S. Yes I 'grew up' to 82, hopefully I've grown up. HA!
Barbara
Irene is my inspiration and hero. -Rick
How can one find out about hiatal hernia without doing endoscopy? My GI said, scopy is the only way to find out.
I had the endoscopy at NJH that confirmed a small hiatal hernia. Hopefully the hiatal hernia is still small.
Barbara
Thank you.
As far as I know, your doc is right - the test is an endoscopy, but usually isn't necessary unless you are having severe symptoms. Here is what Mayo Clinic has to say:
https://www.mayoclinic.org/diseases-conditions/hiatal-hernia/symptoms-causes/syc-20373379
My father is diagnosed with the following medical conditions , Docs told he has only 20% of lungs left, he will be on 24*7 o2 support (4lpm) and suggested for a possible lung transplant but due to my father weakness (age 63) and other conditions we are thinking not to opt for lung transplant and go with medical management only . So docs are giving (Voriconazole (VORITEK 200MG ) , Tobramycin 300 MG , Nebsmart g,Levolin 0.63,Mucinac 600,Mucinac 600,Dytor 5MG ,DILZEM 30 MG,CLOPILET A 75M,Urimax D ) for his medical conditoins .. But after he started using this medication he become more weaken , and got more new problems like more dizziness , unable to talk properly , full water in legs , abdomen tightness and other problems he is facing .. Is there anyone who is in this situation ? who used voriconazole and cured? we are loosing hope dad by dad seeing him. So looking for some positive stories to hear.
Diagnosis. :
Allergic Bronchopulmonary Aspergillosis
Post Tubercular Sequelae
Known Case of Obstructive Airway Disease
Type I Respiratory Failure on LTOT
Cor Pulmonale
Severe Pulmonary Arterial Hypertension (RVSP - 85 mmHg)
Grade III/IV Progressive Dyspnoea, Cough with Purulent Expectoration
Cholelithiasis (Hyperechoic Calculi of 6 mm)
Golly that’s a lot! I’m so sorry! I was on that med (Vfend) for forever, and have been on the others but not all at the same time. I was cured using Voriconazole, but I was not nearly as sick as your husband. The bigger concern I think is the fluid building up in his legs/feet. That needs to be addressed asap. Praying for you both. Irene5
@ling what were the symptoms of your aspergillus infection or aspergillus was found during the bronchoscopy only, if I may ask
I have MAI that was treated for 18 months with the Big Three, but the bacteria is still present. I have follow-up CT scans every six months to monitor its progression. After a questionable CT, a bronchoscopy was performed last November. It confirmed aspergillus, and voriconazole was prescribed for 90 days. At the beginning of March, I'll have another CT scan.
If you take other medicines, you need to check if there are any interactions. Voriconazole can increase the strength of many drugs. I had to completely change my statin to another, and a blood pressure med and my acid reflux med had to have the strength decreased.
For me, the voriconazole has had a lot of side effects. They began with the first pill when everything I looked at was the color purple. Those visual disturbances have continued with twinkling in my eyes most days too, but over time the color changes have decreased a lot. Glare from light has increased. Sunglasses are recommended, and driving at night is not recommended - I haven't driven at night. These effects are supposedly called central nervous toxicity and will go away after finishing the medicine.
I have lost some hair but since I have thick hair, that's not too much of a concern. Fatigue is also a big problem.
The biggest side effect for me is something I can only call "brain fog". I am always "out of it". I don't speak correctly, and I replace many words. (I held up the milk and called it the bread.) I am forgetful to the point of having my husband pretty worried. (I make toast or coffee, walk away, and find it 3 hours later.) I feel funny when I leave the house and am often in a daze and unsteady, so my husband has driven me everywhere.
I considered stopping the medicine but realize (especially since I still have MAC) that getting rid of the aspergillus is very important. It can lead to invasive aspergillus which is not a good thing.
HOWEVER, every person is different. You may not have any side effects at all or may have different ones. I only have a couple of weeks left to take voriconazole, and though I've struggled, I know it is important to kill the fungus. Good luck with whatever you decide!