1. < MAC & Bronchiectasis

What was your experience with Voriconazole?

Posted by @ling @wangling, Aug 8, 2024

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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@ling | @wangling | 4 days ago
In reply to @lilianna "@ling what were the symptoms of your aspergillus infection or aspergillus was found during the bronchoscopy..." + (show)
@lilianna

@ling what were the symptoms of your aspergillus infection or aspergillus was found during the bronchoscopy only, if I may ask

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Hi @lilianna,
During the bronchoscopy, my pulmonologist saw some discolored area, so he wanted me to start voriconazole right away for aspergillus. After I took the medication for 10 weeks, I saw my ID Keven Winthrop. He said I should stop the medication because my sputum sample collected during the bronchoscopy did not grow the fungus. Then my pulmonologist agreed that I could stop the medication. So here is my story.

Ling

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1 reply
lilianna | @lilianna | 4 days ago
In reply to @wangling "Hi @lilianna, During the bronchoscopy, my pulmonologist saw some discolored area, so he wanted me to..." + (show)
@wangling

Hi @lilianna,
During the bronchoscopy, my pulmonologist saw some discolored area, so he wanted me to start voriconazole right away for aspergillus. After I took the medication for 10 weeks, I saw my ID Keven Winthrop. He said I should stop the medication because my sputum sample collected during the bronchoscopy did not grow the fungus. Then my pulmonologist agreed that I could stop the medication. So here is my story.

Ling

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Yes it’s a story

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cwal | @cwal | 3 days ago

It seems that many times after (or during) the time that someone has taken the Big 3 for MAC that they come up being Dx with Aspergillus. Has anyone else noticed this? Is this just coincidence?

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2 replies
Rick | @rstel7272 | 3 days ago
In reply to @cwal "It seems that many times after (or during) the time that someone has taken the Big..." + (show)
@cwal

It seems that many times after (or during) the time that someone has taken the Big 3 for MAC that they come up being Dx with Aspergillus. Has anyone else noticed this? Is this just coincidence?

Jump to this post

Cwal, I sure did. Here is a paper on it ..
https://www.mdpi.com/2309-608X/6/4/346
~Rick

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1 reply
pacathy | @pacathy | 3 days ago
In reply to @dilipddba "My father is diagnosed with the following medical conditions , Docs told he has only 20%..." + (show)
@dilipddba

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)

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I’m so sorry you’re going thru this and have to face these difficult decisions. I am lucky that although I have bronchiectasis, it’s mild and I haven’t been on these meds.
I worked in hospitals until I retired and suggest you ask for a social worker if they haven’t seen your family yet. They were a great source of support for the families of our critically ill patients as they faced these difficult decisions.

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cwal | @cwal | 3 days ago
In reply to @rstel7272 "Cwal, I sure did. Here is a paper on it .. https://www.mdpi.com/2309-608X/6/4/346 ~Rick" + (show)
@rstel7272

Cwal, I sure did. Here is a paper on it ..
https://www.mdpi.com/2309-608X/6/4/346
~Rick

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Thanks. Not great news. Seems we are doomed at every turn sometimes. But that's the facts.

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kathyjjb | @kathyjjb | 2 days ago

Agree, not good news! I've had trace candida in a few of my sputum checks. Just another concern that I will bring up at next doctor's appointment. And I haven't even started the Big 3 yet for MAC A. And MAC Abscessus may require more than 3? My ID doctor wants to wait until I get into NJH and who knows when that will be.

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ashleye | @ashleye | 1 day ago

I was on Vorconazole for two months for fungus infection. I had various side effects including pains in my abdomen. 2 days after stopping the voconazole I had an emergency gall bladder removal, for severe inflammation. (No previous issues with gall bladder) None of the doctors wanted to see a connection but the drug literature/documents lead me to think there is a correlation.
I'm curious if anyone had anything similar that could be perceived as not related?

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irene5 Irene Estes | @irene5 | 18 hours ago
In reply to @cwal "It seems that many times after (or during) the time that someone has taken the Big..." + (show)
@cwal

It seems that many times after (or during) the time that someone has taken the Big 3 for MAC that they come up being Dx with Aspergillus. Has anyone else noticed this? Is this just coincidence?

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Not a coincidence! Unfortunately that seems to be the case with many of us. With that said, aspergillosis is more treatable (according to my ID doctor). Irene5

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cynthiascubadive | @cynthiascubadive | 14 hours ago
In reply to @blm1007blm1007 "As I read all the above and all the many posts in different threads/topics regarding medications..." + (show)
@blm1007blm1007

As I read all the above and all the many posts in different threads/topics regarding medications for the BE infections I am overwhelmed with thoughts. First I want to say to all of you....WOW....you all, as well as Sue, and others amaze me in terms of all you have had to persevre with in terms of the infections,medications and side affects. I'm not quite sure I will be as strong and determined as you all seem to be.
So far NJH and Tyler doctors didn't feel I needed to be on any drugs as yet due to mild CScan, sputum results and no typical signs of an exacerbation. My PFT is off the scale in the right direction at this point.
I may need all the encouragement you all are able to give should I have to make a medication decision for any of the infections one can develop with BE.
At a few months away from 82 years into life I am not sure I will want to deal with all that. Time will tell because I would imagine my day will arrive when I will hear......''time for treatment with medications for MAC, MAI etc. etc. Thanks for all the thoughts you have shared with me to date.
Barbara

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Barbara, I have BE too and my PFT is also high (99%) for my age.
Doesn’t that sound weird? Shouldn’t we have poor pulmonary function with BE. I’m confused.
Oh and I am being treated for MAC and Aspergillus too. No side effects after 5 months of treatment. Praises.

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