1. < MAC & Bronchiectasis

Negative sputum results without treatment

Posted by sayaboleh @sayaboleh, May 12, 2019

Has anyone had spontaneous sputum conversion without taking the big 3? I was told recently that my latest samples produced no pathogens -- i.e. MAC organisms. That is great news of course -- I had no idea that would happen but found some studies that 40- 60% can spontaneously convert without the benefit of treatment. I was diagnosed about 8 years ago and just assumed I would always have it. I have had no symptoms other than a flare up recently when I caught a cold, hence the sputum samples to figure out what was going on. I was given a long explanation by my pulmonologist which was a little difficult to follow. Would love to hear from others if they know anything about this.
Mary

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2019
In reply to @alleycatkate "@pfists @windwalker Regarding the 40-60 conversion sputum rate, I was happy to find the following article..." + (show)
@alleycatkate

@pfists @windwalker Regarding the 40-60 conversion sputum rate, I was happy to find the following article that helps substantiate those numbers. https://www.ncbi.nlm.nih.gov/pubmed/28275170

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@alleycatkate, Thank you for posting this. I did not understand the second to the last sentence though. If a patient tested negative at their initial diagnosis, wouldn't they have a better prognosis? Also, we all need to put some pounds on it sounds like.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2019
In reply to @sayaboleh "I was thinking that as well! I remember when I was first diagnosed and there was..." + (show)
@sayaboleh

I was thinking that as well! I remember when I was first diagnosed and there was much discussion about treating with the big 3 even though I had no symptoms. I was told that there was a risk involved with not starting treatment although it was not clear what that was! I was almost ready to go down that road again recently. It would seem that my cold was a blessing in disguise as I would never have produced any samples for testing otherwise. I still have Bronchiectasis but it is such a load off my mind not to have MAC as well.
Mary

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@sayboleh Hi Mary. So GLAD you are mac-free!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2019
In reply to @sayaboleh "@alleycatkate Thanks for posting this. I was struck by the number of studies coming out of..." + (show)
@sayaboleh

@alleycatkate Thanks for posting this. I was struck by the number of studies coming out of South Korea, apparently a hotbed for MAC in Asia. I wonder why. There is not much known about MAC in Asia, esp. in Singapore. I saw a cardiologist there some years ago and he was very surprised to hear that I had MAC. He thought that it affected only those with HIV.

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Hopefully, the drs are getting wiser about mac.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2019
In reply to @alleycatkate "@sayaboleh Mary...Hello! I was looking for the original post (yours) mentioning the sputum conversion but could..." + (show)
@alleycatkate

@sayaboleh Mary...Hello! I was looking for the original post (yours) mentioning the sputum conversion but could not find it. Your posting was the first that I had heard of this possibility and it is so very promising. I wonder why it is not more publicized? It does give a lot of hope. I appreciate your wake-up on this possibility. Thanks You! Kate

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@alleycatkate National Jewish Health claims they have a good conversion rate. You can probably look it up on their website. A doctor from NJH who spoke at the 2016 World NTM convention had stated that.

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Brenda R. | @brigby | May 14, 2019
In reply to @windwalker "@brigby No, I have not, but I have read about it in the past. Do you..." + (show)
@windwalker

@brigby No, I have not, but I have read about it in the past. Do you have that going on now?

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@windwalker The dermatologist biopsied a spot on my elbow yesterday. It will be a couple of weeks before we get results. Her guesses were granuloma annulare, or maybe sarcoidosis, rather than erthyma nodosa.

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alleycatkate | @alleycatkate | May 14, 2019

@windwalker ...thanks Terri....I will check it out!

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pfists | @pfists | May 14, 2019
In reply to @windwalker "@pfist Hi Shari. Are you getting regular lung function tests done to make sure your FEV..." + (show)
@windwalker

@pfist Hi Shari. Are you getting regular lung function tests done to make sure your FEV is not on the decline?

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@windwalker
Terri
Yes I just got one a couple of weeks ago and will see my Pulmonologist in July for another one and a CT scan.
It was kinda low this last time but with me it's hard to tell what's what. I have asthma bronchectasis and some aspergillus showed up in last scope. I'm getting treated for the aspergillus with a anti fungal now. The asthma complicates things because I'm highly allergic to aspergillus.
With these studies on spontaneous conversion of MAC is sounds the younger and heavier you are the better.
Does anyone know any studies on people being treated for MAC with antibiotics and what percentage of those people get well and stay well?
My understanding is that it comes back a lot of the time but I'm not clear on what those percentages are.
But it is good news that around 50% spontaneously convert from MAC!
Shari

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2 replies
sayaboleh | @sayaboleh | May 14, 2019
In reply to @pfists "@windwalker Terri Yes I just got one a couple of weeks ago and will see my..." + (show)
@pfists

@windwalker
Terri
Yes I just got one a couple of weeks ago and will see my Pulmonologist in July for another one and a CT scan.
It was kinda low this last time but with me it's hard to tell what's what. I have asthma bronchectasis and some aspergillus showed up in last scope. I'm getting treated for the aspergillus with a anti fungal now. The asthma complicates things because I'm highly allergic to aspergillus.
With these studies on spontaneous conversion of MAC is sounds the younger and heavier you are the better.
Does anyone know any studies on people being treated for MAC with antibiotics and what percentage of those people get well and stay well?
My understanding is that it comes back a lot of the time but I'm not clear on what those percentages are.
But it is good news that around 50% spontaneously convert from MAC!
Shari

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@pfists. Great question Shari. I was told that percentages are low with a high probability of recurrence but no specific numbers were offered. I found one study which suggests a much higher rate of 82%? That seems really optimistic. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4595680/
Here's another study that reported treatment success rates (not sure how defined) between 32% to 65% but also pointed out that certain factors contributed to high success rates. There is also mention of the spontaneous conversion rates I brought up in my original post. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6304322/
Hope this helps.
Mary

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pfists | @pfists | May 14, 2019

@sayaboleh
Thanks for the info on recurrence rates of ntm good to know.
While I was looking myself I saw a study on this new inhaled medication that inhances your own immune system to fight off these diseases, ntm was mentioned as one. Its called malgramostim.
Check out this article.
Shari

The Food and Drug Administration (FDA) has granted Fast Track designation to Molgradex (molgramostim; Savara) for the treatment of autoimmune pulmonary alveolar proteinosis (aPAP), a rare lung disease characterized by the accumulation of surfactant in the airways.

Molgradex is an inhaled formulation of recombinant human granulocyte-macrophage colony-stimulating factor (GM-CSF). The Company is currently conducting a phase 3 trial (IMPALA) of the treatment in 135 aPAP patients; topline results are expected in June 2019.

“We are excited by this designation as it reinforces that a better treatment option is needed for people living with aPAP,” said Rob Neville, Chief Executive Officer, Savara. Currently, there are no pharmacological treatments approved for aPAP; whole lung lavage is considered the standard first-line therapy.

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Molgradex is also being evaluated for the treatment of nontuberculous mycobacterial (NTM) lung infection in both non-cystic fibrosis (CF) and CF-affected individuals with chronic NTM lung infection.

For more information visit Savarapharma.com.

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