1. < MAC & Bronchiectasis

expereince of taking Voriconazole

Posted by @ling @wangling, Aug 8 6:24pm

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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tconz | @tconz | Aug 12 7:42am
In reply to @scoop "@irene5 A little unrelated but I am curious if the aspergillosis was detected in a routine..." + (show)
@scoop

@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!

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All of my sputum samples came back Negative for Fungus and MAC for 16 months and then a CT showed a cavity that NJH suspected Aspergillus. I had a Bronchoscopy and I ended up testing Positive for both Aspergillus and MAC Abscessuss. I was so devastated because I was only off all Meds for 5 glorious months. Don't understand how ALL those months of Negative from NJH happened. My Pulmonologist started me on Voriconazole right away. I go back to NJH for my 6 month checkup in November.

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lolaf | @lolaf | Aug 12 10:27am

Did you have CTs during the time you were testing negative? If so, were there any indications of inflammation or infection or progressed lung damage during that time? Did you feel any differently during the time you tested negative? Were you nebulizing with hypertonic saline even though you tested negative? Sorry to have so many questions but this condition is so mystifying, seems our lungs are so vast & complicated that it is hard to grasp all that may be going on !

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scoop | @scoop | Aug 12 10:53am

@ling "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."

Vulnerability -- absolutely. First, having bronchiectasis. Add asthma and its treatment (usually inhaled steroids) makes us even more susceptible to picking up stuff as steroids suppress the immune system. Untreated asthma can make bronchiectasis worse, however, which might result in progressing bronchiectasis. Find minimum effective dose, which is a fine line to manage.

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1 reply
@ling | @wangling | Aug 12 10:59am
In reply to @irene5 "Ling, what I have found in life is that asking the “why” of anything will just..." + (show)
@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)

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Hi irene5,
Getting off the steroid inhaler, do you replace it with something else? I do use steroid inhalers quite often.
You are absolutely right, the "why" questions get us nowhere most of the time. I grew up in China, all my siblings and my 100 year old mother are still living there, even though they come to the states often for a visit. You all heard about the bad air pollution in China in the past. I remember there was an article in the Economic magazine talking about how bad the air was. It was like smoking 400 cigarettes a day. Guess what? None of them have lung conditions. Here I am, living in the United States for 40 years, religiously exercising for over 30 years---hiking, swimming, yoga, taichi, pilate ... and eating right. I also do forest bathing. Where can I find the answer for that?
I am so glad and grateful for this community, people like you so generously sharing their experiences.
Thank you and take care!
Ling

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1 reply
@ling | @wangling | Aug 12 11:25am
In reply to @scoop "@ling "I don't understand why we get this fungus. It doesn't seem that a lot of..." + (show)
@scoop

@ling "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."

Vulnerability -- absolutely. First, having bronchiectasis. Add asthma and its treatment (usually inhaled steroids) makes us even more susceptible to picking up stuff as steroids suppress the immune system. Untreated asthma can make bronchiectasis worse, however, which might result in progressing bronchiectasis. Find minimum effective dose, which is a fine line to manage.

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You are right, Scoop. Because of these conditions we don't have an alternative. I have been trying to use Breyna one puff each time instead of two puffs.
I hope you are doing well.
Take care!

Ling

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irene5 Irene Estes | @irene5 | Aug 12 12:29pm
In reply to @wangling "Hi irene5, Getting off the steroid inhaler, do you replace it with something else? I do..." + (show)
@wangling

Hi irene5,
Getting off the steroid inhaler, do you replace it with something else? I do use steroid inhalers quite often.
You are absolutely right, the "why" questions get us nowhere most of the time. I grew up in China, all my siblings and my 100 year old mother are still living there, even though they come to the states often for a visit. You all heard about the bad air pollution in China in the past. I remember there was an article in the Economic magazine talking about how bad the air was. It was like smoking 400 cigarettes a day. Guess what? None of them have lung conditions. Here I am, living in the United States for 40 years, religiously exercising for over 30 years---hiking, swimming, yoga, taichi, pilate ... and eating right. I also do forest bathing. Where can I find the answer for that?
I am so glad and grateful for this community, people like you so generously sharing their experiences.
Thank you and take care!
Ling

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China is a wonderful and beautiful country!! One of our children has a degree in Chinese and business from UCONN. And yes - everyone smokes and it’s hard to see a clear blue sky in many cities. Go figure you get lung disease in the U.S. A good non steroid inhaler Ling is Spiriva. Look into that one. (irene).

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2 replies
scoop | @scoop | Aug 12 1:58pm
In reply to @irene5 "China is a wonderful and beautiful country!! One of our children has a degree in Chinese..." + (show)
@irene5

China is a wonderful and beautiful country!! One of our children has a degree in Chinese and business from UCONN. And yes - everyone smokes and it’s hard to see a clear blue sky in many cities. Go figure you get lung disease in the U.S. A good non steroid inhaler Ling is Spiriva. Look into that one. (irene).

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@irene5 I found Spiriva drying to bronchiectasis making it harder to get the gunk out. It's an anticholinergic, which can also be also drying to the eyes, mouth etc. It seems it's a matter of choosing one with the least side effects that you can live with. Anticholinergic vs steroid inhaler, maybe anticholinergic is better, I just don't know! There's also singulair for asthma, cheap effective but gave me body aches. Ugh.

My practitioner is talking with me about biologics now. Maybe I should start a new topic.

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@ling | @wangling | Aug 12 3:12pm
In reply to @irene5 "China is a wonderful and beautiful country!! One of our children has a degree in Chinese..." + (show)
@irene5

China is a wonderful and beautiful country!! One of our children has a degree in Chinese and business from UCONN. And yes - everyone smokes and it’s hard to see a clear blue sky in many cities. Go figure you get lung disease in the U.S. A good non steroid inhaler Ling is Spiriva. Look into that one. (irene).

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Thanks Irene. I have Spiriva. I learned this from @scoop. I only tried for a few days then I stopped. Now I think I should try again.
Ling

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sweethighland | @sweethighland | Aug 12 4:24pm
In reply to @irene5 "Thank you for your question. Unfortunately, I am not a spitting kind of gal so bronchoscopy..." + (show)
@irene5

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)

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Is minimally invasive robotic lung bronchoscopy the same as VAT lung surgery as you mentioned in previous post?

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1 reply
irene5 Irene Estes | @irene5 | Aug 12 5:45pm
In reply to @sweethighland "Is minimally invasive robotic lung bronchoscopy the same as VAT lung surgery as you mentioned in..." + (show)
@sweethighland

Is minimally invasive robotic lung bronchoscopy the same as VAT lung surgery as you mentioned in previous post?

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@sweethighland VAT surgery although considered minimally invasive is not the same as the robotic procedure I had done. ( irene5)

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