Anyone have cavitary MAC?

Posted by maureen2022 @maureen2022, May 23 7:28pm

Hi everyone,
I am 46 yo woman diagnosed with MAC. I have no bronchiectasis, but I have cavitation in one of the nodules. I started the meds 3 months ago and only mil side effects. I follow a good diet and lots of whole foods / probiotic & fermented food which helps. I was told I am a strange "bad luck" case since I have cavitation.

I was wondering if anyone else had cavitary disease and if it felt weird once the meds started. I never coughed or had a fever much but now I do cough a bit and feels like things are moving around. Any one else have cavitation and stories of how this felt as it was healing?

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

Hi @maureen2022 and welcome. There are several members in the MAC group who have cavitary MAC, like @kaystrand @bluesplashgirl @melissa08 @Paula_MAC2007 @ellenn. I'm confident they will join the discussion to share their experiences with you.

In the meantime, you may wish to see these related discussions:
– Has anyone had VATS procedure for cavitary lesion from MAC https://connect.mayoclinic.org/discussion/has-anyone-had-vats-procedure-for-cavitary-lesion-from-mac/
– MAC and NTMs with Cavities: https://connect.mayoclinic.org/discussion/mac-and-ntms-with-cavities/

Maureen, what medications are you taking? What helps with your cough?

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Hi Colleen,
Thanks for your reply. I take azithromycin daily, rifampin daily and ethambutol 3xweek. The only thing that helps my cough is to exercise and then the next morning I cough out and I feel better. Also I am back to eating plant based and dairy free which helps alot – I eat a whole foods diet and the whole grains is what keeps the digestion clear. I notice a difference if I eat refined grains or sugar so I avoid.

I am new to this as during the pre-medicine phase I had little to no symptoms apart from a few flare ups. I am wondering if this is likely just how it feels when cavities heal. I feel things happening in my chest where I did not before.
Thanks,
Maureen

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@maureen2022

Hi Colleen,
Thanks for your reply. I take azithromycin daily, rifampin daily and ethambutol 3xweek. The only thing that helps my cough is to exercise and then the next morning I cough out and I feel better. Also I am back to eating plant based and dairy free which helps alot – I eat a whole foods diet and the whole grains is what keeps the digestion clear. I notice a difference if I eat refined grains or sugar so I avoid.

I am new to this as during the pre-medicine phase I had little to no symptoms apart from a few flare ups. I am wondering if this is likely just how it feels when cavities heal. I feel things happening in my chest where I did not before.
Thanks,
Maureen

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The Big 3… yes, those guys can be tough but necessary. When was your last CT and are you scheduled for another?

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PS – I just sent you a PM.

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I've been on the Big 3 for over 6 months with no side effects. I had a cavity that was just over 2 cm in diameter (which technically qualified me as having cavitary disease), but after going on the meds, it's now down to 1 cm. I am still positive, however, and will probably be going on Arikayce shortly.

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Hi Maureen,
Welcome to this wonderful group. I have only been following MAYO Connect for a short time, after floundering around the digital world looking for answers to my ever growing pile of MAC questions.

This discussion site has a wealth of information provided by an informed and empathetic group. The turnaround is amazingly quick for replies to questions, group welcomes, and fast connections to others with similar experiences and/or common issues.

My husband Bruce has cavitary MAC, finally diagnosed in September 2021 following several years of escalating symptoms. He has a large cavity in the lower left lung presumed to be caused by percolating MAC bacteria.
Bruce also has Bronchiectasis.

He uses a couple of inhalers, a nebulizer two times daily with 7% sodium chloride followed by the Aerobika, plus the Arikayce nebulizer every day.

He is also on the 3 biggie oral antibiotics – Ethambutol, Rifampin and Clofazimine, the latter substituted for Azithromycin after it failed sensitivity analysis to Bruce's MAC bacteria. He's had several negative cultures mixed with a positive and has lots of side effects both from the heavy duty antibiotics and the MAC.

He coughs a lot, bringing up significant amounts of sputum daily. He has never had a fever but there has been a significant and debilitating uptick in shortness of breath since he started the MAC treatment. Other side effects include weight loss, lack of appetite, foggy brain and confusion.

Bruce, who is originally from northwestern Minnesota, is currently being treated at Johns Hopkins Bayview which is east of Baltimore in Maryland (where we live), by an ID/Pulmonology Critical Care team who specialize in NT MAC.

As his caregiver I manage his medical situation, monitoring meds and treatments, attending medical appointments with him, handling follow up, and asking lots and LOTS of questions. 😉

All the best with your MAC treatments. It sounds like you are on a road to feeling better.
Melissa

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@melissa08

Hi Maureen,
Welcome to this wonderful group. I have only been following MAYO Connect for a short time, after floundering around the digital world looking for answers to my ever growing pile of MAC questions.

This discussion site has a wealth of information provided by an informed and empathetic group. The turnaround is amazingly quick for replies to questions, group welcomes, and fast connections to others with similar experiences and/or common issues.

My husband Bruce has cavitary MAC, finally diagnosed in September 2021 following several years of escalating symptoms. He has a large cavity in the lower left lung presumed to be caused by percolating MAC bacteria.
Bruce also has Bronchiectasis.

He uses a couple of inhalers, a nebulizer two times daily with 7% sodium chloride followed by the Aerobika, plus the Arikayce nebulizer every day.

He is also on the 3 biggie oral antibiotics – Ethambutol, Rifampin and Clofazimine, the latter substituted for Azithromycin after it failed sensitivity analysis to Bruce's MAC bacteria. He's had several negative cultures mixed with a positive and has lots of side effects both from the heavy duty antibiotics and the MAC.

He coughs a lot, bringing up significant amounts of sputum daily. He has never had a fever but there has been a significant and debilitating uptick in shortness of breath since he started the MAC treatment. Other side effects include weight loss, lack of appetite, foggy brain and confusion.

Bruce, who is originally from northwestern Minnesota, is currently being treated at Johns Hopkins Bayview which is east of Baltimore in Maryland (where we live), by an ID/Pulmonology Critical Care team who specialize in NT MAC.

As his caregiver I manage his medical situation, monitoring meds and treatments, attending medical appointments with him, handling follow up, and asking lots and LOTS of questions. 😉

All the best with your MAC treatments. It sounds like you are on a road to feeling better.
Melissa

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Hi Melissa,
Thanks for sharing! I am sorry to hear that Bruce also has cavitary mac. So interesting that once he started the big three he also starting having more shortness of breath. I also feel different since starting medicine. Coughing only started once I took the meds. I appreciate all the information. Looking forward to engaging with the discussions! All the best. Bruce is lucky to have you caring for him.
Maureen

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@melissa08
Hi Melissa, I haven't joined in on these conversations for quite some time even though I check in almost daily and of course I've learned so much over several years from everyone. I too have cavitary MAC. Right now my treatment consists solely of twice a day nebulizing 7% sodium chloride to keep my lungs as open as possible. I was on the Big 3 for two and a half years and never once tested negative and finally said I've had enough because the meds made me so sick and didn't conquer the infection. My infectious disease doc understood my decision but really wanted me to continue because he felt the meds were keeping down the progression of the disease. He might be right but the meds made my life pretty miserable. He also wanted me to add arikayce, but the cost to me would have been $2000 per month. I applied for financial relief but didn't qualify. I refused arikayce because of the cost. Are you paying a similar rate? And do you find that arikayce makes a significant difference?
I always appreciate what I learn from everyone in this forum.
Olivia

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Hi Olivia,
I am also learning a lot from this group. My husband Bruce has a pretty tough case of MAC.
We were able to get Arikayce covered by insurance minus our co-pay, following a month of infused (via catheter) Amikacin.
The infusions damaged Bruce’s hearing which made him eligible for coverage for the Arikayce.
Did you start with Amikacin?
Bruce has been using Arikayce for 5 months so far with continuing insurance coverage.
He has debilitating shortness of breath which his doctor thought was due to the Arikayce. After being off it for about 10 days there was no improvement in his breathing.
He is back on Arikayce as of today while his doctors search for another cause for the breathing difficulties.
He also takes the 3 biggie drugs and uses 7% neb saline twice a day plus an Aerobika and other inhalers.
For what it’s worth, Bruce’s ID Pulmonology team at Johns Hopkins view Arikayce as the premiere drug for eradicating the MAC bacteria.
That made it a hard decision to potentially terminate its use despite the side effects.
Wishing you well in your search for information.
Melissa

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Hello Group,
I also refused Arikayce because of the potential hearing loss. I already have tinnitus so I just didn’t want to risk it. I was told by my Mayo doc that as long as there are cavities the Big 3 drugs will not be delivered to that area for lack of blood supply in the cavities. Seemed like a losing battle. I followed my gut and stopped nebulizing in November and in February the cavity had collapsed. Go figure. I wish us all the best of luck with this sneaky disease. It can be frustrating and disheartening, to say the least.

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@bluesplashgirl

The Big 3… yes, those guys can be tough but necessary. When was your last CT and are you scheduled for another?

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I am going back in July for another CT and to do airway and fitness testing. Thanks everyone for the sharing and advice. 🙂

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