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New to MAC and considering treatments options: What did you do?
Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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No, the meds are to eradicate the bacterial infection. Unfortunately, there's no treatment for bronchiectasis. They are doing a trial now for a potential bronchiectasis med called Brensocatib.
The doctors who have their 'finger on the pulse' of bronchiectasis recommend nebulizing with saline and using a PEP device to get mucus moving out of lungs and mitigate progression of the condition.
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Hug
2 ReactionsThe standard protocol is the Big 3, if the patient can't tolerate the Big 3 or the bacteria aren't susceptible (especially to Azithromycin/Clarithromycin), then they will try another antibiotic. The arsenal of available therapies is very limited, however.
If the patient has nodular MAC and is reasonably stable, they will treat with the Big 3, three days per week.
If the patient has cavitary disease (cavity larger than 2 cm), they will do daily Big 3 treatment. Daily treatment is also used for refractory/stubborn MAC (defined as lack of sputum conversion within first 6 months).
Also, if patient doesn't convert within 6 month on either daily or 3 day per week Big 3, they recommend adding Arikayce. Arikayce is an inhaled liposomal form of Amikacin. Amikacin in IV form is used in cases that are extremely stubborn/severe.
I take the Big 3 all at once, in addition to daily Arikayce.
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1 ReactionOkay thank-you.
Hi! I occasionally use Delta 8 tincture. It helps on days when fatigue & fever make it difficult to function. However, you need to be careful with dosing if used. It is powerful and suggested doses made me “high”, which wasn’t what I wanted when trying to go into office.( of course, with weight loss, I’m only 100 lbs). I had to adjust dose by trial and error but found that about 10 ml allows me to work on bad days giving me more energy and reducing that all around feeling of just not feeling well. Anyway,if not familiar- it is made with the hemp from marijuana. This recently became legal in my state.
hello @extracare808 Thanks for the info on Brensocatib I have never seen it mentioned before. It looks like the study was done in 2020 Do you know of any information since then? Here is a link to National Jewish https://www.nationaljewish.org/about/news/press-releases/2020/brensocatib-reduces-bronchiectasis-exacerbations and a link to the actual trial https://www.nejm.org/doi/full/10.1056/NEJMoa2021713
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2 ReactionsNot sure if they are still accepting participants, but someone on another message board recently said they were eligible to participate, but reconsidered after realizing the trial requires a 5 year commitment and she didn't want to risk getting the placebo.
Hello -
There have been a number of suggestions for tinctures, herbs, supplements, etc by members on Connect who are infected with MAC or affected with Bronchiectasis.
I wanted to see if I could help with your questions, so I took a minute to read through your posts. It seems that, like with many of us, it took a while to get a diagnosis and now you are waiting to see what drugs will be prescribed. And reading - and you are scared by what you read. ALL of this is familiar to me, and nearly everyone else who has/had MAC! It is a rare disease few people have heard of (until they get it) - and even most doctors and many pulmonologists are not well-versed in it.
So, let's back up a step and talk about the goals of Mayo Connect. The aims are to connect community members who have similar diagnosis to one another for support. Part of that support is to talk about what are the best courses of treatment, and what has helped us along the way. In addition, we encourage each person to her own best advocate & and informed consumer of both medical services and auxiliary treatments. Another piece is to make sure that any treatment recommended is safe, as well as based on some sort of science or research.
Now on to MAC and when/how to treat. It is a very slow-growing bacteria that can be found everywhere, so few of us know how we acquired it. It is quite difficult to eradicate once it takes hold, because it hides itself inside a tough "biofilm" shell. That is why it requires a rigorous long-term course of 3 (sometimes 4) antibiotics. Some people's bodies are able to get rid of it without treatment, others are never "cured" no matter what they take of for how long. In some lungs, it invades and causes nodules & cavities, in others it just hangs around with few symptoms. Ugh! How to know what to do?
National Jewish Health (NJH) and some other lung-focused research and treatment centers focus on this issue every day, and the recommendations are updated every couple years. Currently, it is 2 positive cultures, CT evidence of cavities or nodules, plus consultation with your docs. Treatment need not be automatic if the lungs do not show severe damage, one can WAIT and MONITOR. Watching this video from NJH is very helpful:
So, if we decide to wait and watch, what can we do?
Follow the doctors' recommendations for repeat sputum cultures, xrays & CT scans.
Stay as healthy as possible - healthy diet, exercise, rest, manage all other conditions, avoid sick people.
If you have asthma, control it to keep airways open.
Work to keep your airways clear, so the bacteria has less warm, dark places to hide. A demonstrated way to do this is via regular airway clearance. That means huff coughing, postural drainage or using an airway vibratory device. There are many examples here and on-line of this.
Next, thin the mucus. To do this directly, you nebulize saline solution. Standard saline is .9%, which will thin the mucus, but not slow the bacteria. 7% saline has been tested, and it's been demonstrated that most Mycobacteria hate it and can't grow in it. NJH supports the usefulness of both airway clearance and 7% saline.
Finally, there have been a few supplements or medications that demonstrably make mucus less sticky. Among these are glutathione and N-acetyl Cysteine.
There is little scientific evidence that other herbs or supplements are both effective for fighting MAC infections and safe for long-term use.
I hope this helps message, along with watching the NJH video, helps you make some decisions.
Sue
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Hug
10 ReactionsThird day of the 7% Saline. Seems I get real light headed - is that normal? Could it be affecting
my heart rate. Just wondering?!
Perhaps you are hyperventilating as you neb? People often try to breathe very deeply to get the solution deep into their lungs. But it's not good to breathe that deeply unless you slow down. I used to do it - my daughter who often used to do nebulizer education in the Emergency Room says "Inhale 1, 2, 3, 4. Hold 1, 2, 3, 4. Exhale 1, 2, 3, 4, 5. Pause 1, 2." It fixed my problem - are you willing to try it?
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4 ReactionsI will. Thanks much!