1. < MAC & Bronchiectasis

MAC nodules

Posted by bibes @bibes, Jul 22, 2019

Hi, everyone. Hope you are having a good day. I thought I knew almost everything about the MAC disease was diagnosed with five years ago.
Six months ago nodules were found in my lungs. I am having another catscan in a few weeks. I haven't seen my pulmonologist since them.
I am 85 and have gotten more and more tired since that last catscan and shorter of breath. 'But still walk 2 miles every day. My questions are this:
Does everyone with MAC get nodules? What are your experiences with this nodule thing? Thank you so much for any information. Elizabeth

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Rick | @rstel7272 | Jul 24, 2023
In reply to @irene5 "The big three are Rifampin, Ethambutol, and Clarithromycin or Azithromycin. ( either). Terri was on alternating..." + (show)
@irene5

The big three are Rifampin, Ethambutol, and Clarithromycin or Azithromycin. ( either). Terri was on alternating meds 2weeks per month of doxycycline and then ciprofloxacin. One month the Doxy and the next Cipro. My ID doctor put me on those as I had issues with the Big 3. I think I took those for about a year. A susceptibility test was done and my MAC wasn’t susceptible to the Cipro. It was then that I started on the Arikayce and am now MAC free. Unfortunately I now am fighting invasive aspergillosis fumagatos with pneumonia which is a whole other ball of wax - or mold really !! C’est la guerre. Hope that answers your question. Irene5

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Quite a few of us now have aspergillus. I was treated for MAC and have been clear for close to 2 years only to have this fungal infection. I've been on voriconazole for 8 months, while the side effects are not terrible, my skin and hair are thinning , my toes are numb, and I am sensitive to the sun for the first time. I did better reaction wise with the big 3.

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1 reply
irene5 Irene Estes | @irene5 | Jul 24, 2023
In reply to @rstel7272 "Quite a few of us now have aspergillus. I was treated for MAC and have been..." + (show)
@rstel7272

Quite a few of us now have aspergillus. I was treated for MAC and have been clear for close to 2 years only to have this fungal infection. I've been on voriconazole for 8 months, while the side effects are not terrible, my skin and hair are thinning , my toes are numb, and I am sensitive to the sun for the first time. I did better reaction wise with the big 3.

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Interesting! I was diagnosed with that last August at UMASS. My lung collapsed and then I had a chest hemorrhage. It was a minimally invasive robotic surgery that went terribly wrong. Apparently my lungs had become fragile and quite inflamed which caused the domino effect for me. I was on Vfend but after 6 weeks could no longer tolerate it. Tried it a second time, and it was bad. They are trying to get Cresemba for me, but it is very pricey. Such a dilemma at this point. Hope you are doing better. Irene

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1 reply
Rick | @rstel7272 | Jul 24, 2023
In reply to @irene5 "Interesting! I was diagnosed with that last August at UMASS. My lung collapsed and then I..." + (show)
@irene5

Interesting! I was diagnosed with that last August at UMASS. My lung collapsed and then I had a chest hemorrhage. It was a minimally invasive robotic surgery that went terribly wrong. Apparently my lungs had become fragile and quite inflamed which caused the domino effect for me. I was on Vfend but after 6 weeks could no longer tolerate it. Tried it a second time, and it was bad. They are trying to get Cresemba for me, but it is very pricey. Such a dilemma at this point. Hope you are doing better. Irene

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I have opted out of vats at NJH. I went back to my UCHealth ID for now. I am not doing too bad on voriconazole other than some skin side effects. I'm thinking Mayo next.

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sadair20 | @sadair20 | Jul 25, 2023

My allergist ordered blood tests that revealed Aspergillus. I don't know what the count was but he wanted to put me on Trelegy to see if that would knock down inflammation potentially contributing to my bronchiectasis. I do have 3 nodules, however 2 are too small to biopsy and the 3rd is right next to my heart so I'm trying to avoid biopsy there.
I haven't taken the Trelegy yet because 1) I don't really want to inhale steroids if I can help it and 2) from what I've read I should be using an antifungal, not a steroid. Does anyone have experience with Trelegy and Aspergillus? Would it make sense to take it to see if it would decrease the size of the nodules?
This entire lung thing can be so confusing.

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3 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 25, 2023
In reply to @sadair20 "My allergist ordered blood tests that revealed Aspergillus. I don't know what the count was but..." + (show)
@sadair20

My allergist ordered blood tests that revealed Aspergillus. I don't know what the count was but he wanted to put me on Trelegy to see if that would knock down inflammation potentially contributing to my bronchiectasis. I do have 3 nodules, however 2 are too small to biopsy and the 3rd is right next to my heart so I'm trying to avoid biopsy there.
I haven't taken the Trelegy yet because 1) I don't really want to inhale steroids if I can help it and 2) from what I've read I should be using an antifungal, not a steroid. Does anyone have experience with Trelegy and Aspergillus? Would it make sense to take it to see if it would decrease the size of the nodules?
This entire lung thing can be so confusing.

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Hmm, Were these blood tests or sputum samples? If the aspergillus is in your lungs, it is time to go back to your pulmonologist - they are more experienced in treating bronchiectasis and related infections. Also, they may have better idea whether your lung nodules are characteristic of a MAC lung infection. Definitely if there is evidence of lung infection, it is good to avoid steroids which depress the immune response.
Does your pulmonologist have you doing airway clearance?
Sue

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1 reply
Rick | @rstel7272 | Jul 25, 2023
In reply to @sadair20 "My allergist ordered blood tests that revealed Aspergillus. I don't know what the count was but..." + (show)
@sadair20

My allergist ordered blood tests that revealed Aspergillus. I don't know what the count was but he wanted to put me on Trelegy to see if that would knock down inflammation potentially contributing to my bronchiectasis. I do have 3 nodules, however 2 are too small to biopsy and the 3rd is right next to my heart so I'm trying to avoid biopsy there.
I haven't taken the Trelegy yet because 1) I don't really want to inhale steroids if I can help it and 2) from what I've read I should be using an antifungal, not a steroid. Does anyone have experience with Trelegy and Aspergillus? Would it make sense to take it to see if it would decrease the size of the nodules?
This entire lung thing can be so confusing.

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I was on Symbicort for 3 1/2 years, aspergillus developed last year. It got worse until I stopped the Symbicort after a NJH Dr added Spirivia. Once this happened I started getting better. I now take Voriconazole. I will never take a steroid again.

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sadair20 | @sadair20 | Jul 26, 2023
In reply to @sueinmn "Hmm, Were these blood tests or sputum samples? If the aspergillus is in your lungs, it..." + (show)
@sueinmn

Hmm, Were these blood tests or sputum samples? If the aspergillus is in your lungs, it is time to go back to your pulmonologist - they are more experienced in treating bronchiectasis and related infections. Also, they may have better idea whether your lung nodules are characteristic of a MAC lung infection. Definitely if there is evidence of lung infection, it is good to avoid steroids which depress the immune response.
Does your pulmonologist have you doing airway clearance?
Sue

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Yes, I am nebulizing and ACTs. Drinking spring water only. Trying to control GERD. All the things. But then, this new info about aspergillus and the prescription for Trelegy threw me. I am not going to use it. I have another CT in September and I'll see my Dr then. Maybe he will weigh in on the aspergillus blood test. He does want a biopsy on the large nodule near my heart. It lit up on a PET scan to 3.5 but I saw a thoracic surgeon who said it could be inflammation or scar tissue so I'm waiting on the biopsy until after next CT.

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irene5 Irene Estes | @irene5 | Jul 26, 2023
In reply to @sadair20 "My allergist ordered blood tests that revealed Aspergillus. I don't know what the count was but..." + (show)
@sadair20

My allergist ordered blood tests that revealed Aspergillus. I don't know what the count was but he wanted to put me on Trelegy to see if that would knock down inflammation potentially contributing to my bronchiectasis. I do have 3 nodules, however 2 are too small to biopsy and the 3rd is right next to my heart so I'm trying to avoid biopsy there.
I haven't taken the Trelegy yet because 1) I don't really want to inhale steroids if I can help it and 2) from what I've read I should be using an antifungal, not a steroid. Does anyone have experience with Trelegy and Aspergillus? Would it make sense to take it to see if it would decrease the size of the nodules?
This entire lung thing can be so confusing.

Jump to this post

So that is odd to me! I was diagnosed with invasive aspergillosis last summer after a lung procedure. A blood test that picks up aspergillosis is probably not good. I am hoping it was an allergy blood test that showed you are allergic to mold - specifically aspergillosis. Trilogy will not help aspergillosis in your lungs. It may be good for your asthma, but if you have aspergillosis get yourself to an infectious disease doctor asap!!! You will be put on something like Vfend or Cresemba - after it is effectively diagnosed. (@irene5)

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1 reply
frankie160 | @frankie160 | Jul 26, 2023
In reply to @irene5 "My doctor put me on the same meds as Terri as the Big 3 made me..." + (show)
@irene5

My doctor put me on the same meds as Terri as the Big 3 made me sick. They are a good fit until they are not. In all honesty I wish I had that cocktail for exacerbations. Susceptibility is the word of the day - if your MAC is not susceptible to either of them, that protocol won’t help you. Arikayce cured my MAC without my feeling side effects. Terri is an excellent resource.

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Hi Irene5 and other Members!

Thanks for your post re Arikayce curing your MAC! I was so encouraged and certainly hope you never have MAC again.

Just wondering when you started Arikayce and how long after were you negative?

I started Arikayce on 7/10/23 and so far with little to no side effects just the voice changes and some extra coughing! I was told by the special Arikayce Pharmacist these side effects could remain for the duration you are on the med. I am also continuing the Big 3 which I have been on for more than 10 months.

Thank you in advance for responding and should there be any other members of this wonderful group who are on Arikayce or have been cured, I would appreciate a response when you can.....

Thanks,
Flo @frankie160

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1 reply
frankie160 | @frankie160 | Jul 26, 2023

Re: Nodules

My March, 2023 CT Scan revealed that 7 of the 9 nodules that were present on my PET scan and on the CT Scan in March 2022 were gone. The Pulmn who is a generalist thought but not 100% sure that the original nodules may have been mucus balls!!! I was so happy that I forgot to check this finding further.
If anyone has had something similar or other thoughts on this matter, it would be most appreciated. Thanks, Flo@frankie160

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