Should I take Big 3 + inhaled ARIKAYCE

Posted by helen1000 @helen1000, Jun 5 11:21am

I am currently 48 year old, I have NTM- MAC with a couple of cavities (1.3 cm * 2.2cm , and 0.5cm* 0.5cm), the big one increased in size from last year ( it was 1.9cm * 1.2cm) and this small one (0.5cm* 0.5cm) is new. Also I have nodules in both lungs widespread. I am using Saline 7% but I don't know whether it helps with cavity. Also my sputum test turned from negative to positive this year. My doctor is concerned that the cavity will keep increasing in size and quantity so he wants me to start antibiotics as soon as possible. He is a great doctor.

I am deeply concerned about the side effects of big 3 + inhaled Arikayce, that my doctor is going to prescribe for me.

Do you think these antibiotics will help with MAC? I truly doubt about it. I did a lot of research, MCA is too hard to cure and it may come back. Not to mention the side effects... I also studies Sue's cases and she is doing really great with Saline 7% without extra antibiotics.

My doctor ( NY) also says they are going to study phage therapy next year. ( I shared my story about phage in Belgium in this forum ) But he says that any new type of antibiotics is not in the pipeline yet. So I am thinking maybe I should take antibiotics. He thinks maybe I can tolerate the medication because of my relatively young age. I don't have other diseases so far.

Do you have any suggestion for me? I am thinking of just closely monitoring with CT every three months. Really struggle with my decision.

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

@helen1000

Want to share this research paper ( PDF file) with everyone but it is too large:-) If you want to read it, send me a private message.

Jump to this post

Here is the link to the free version of the full article.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7612847/
Editorial Comment - This is a paper sponsored by a company developing a drug to treat the gut biome along with antibiotics.
KEY POINT - Nowhere do they suggest antibiotics not be used when warranted.

Here is a tip on how I found it. I copied the exact article title and pasted it into my Google Search window. In addition to the paid version in Nature magazine, the authors had released this version.

REPLY
@sueinmn

Here is the link to the free version of the full article.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7612847/
Editorial Comment - This is a paper sponsored by a company developing a drug to treat the gut biome along with antibiotics.
KEY POINT - Nowhere do they suggest antibiotics not be used when warranted.

Here is a tip on how I found it. I copied the exact article title and pasted it into my Google Search window. In addition to the paid version in Nature magazine, the authors had released this version.

Jump to this post

Dear Sue, thanks for doing that for everyone. I am thinking to save this pdf to 5 different docs to make it smaller. Your way is definitely more practical and economical 🙂
The author does mention four drugs which can protect gut from Azithromycin and another type of antibiotics ,worth reading
🙂
Best luck to all of us.

REPLY
@helen1000

Dear Sue, thanks for doing that for everyone. I am thinking to save this pdf to 5 different docs to make it smaller. Your way is definitely more practical and economical 🙂
The author does mention four drugs which can protect gut from Azithromycin and another type of antibiotics ,worth reading
🙂
Best luck to all of us.

Jump to this post

Hi Helen - This paper was sponsored by the pharmaceutical company trying to decide whether to develop a drug for treating antibiotic effects on the gut biome.

I read the paper and concluded that the drugs under study are not on the market for treating antibiotic changes in the gut - they are under development, still in the lab/animal testing stage.

I found references to three drugs that were tried for this report, but each has its own side effects. Benzbromarone is used for gout, but it has the side effect of liver toxicity. Dicumarol is an anticoagulant - again with its own issues. Tolfenamic acid, sometimes used for migraines or arthritis, can be toxic to kidneys,

Here is their summary:
"Altogether, we provide a route for identifying antidotes that specifically mitigate the collateral damage of antibiotics on commensals, particularly on Bacteroides spp. This concept needs further development before any application — e.g. antidotes should be tested for dosing or formulation to optimize pharmacokinetics and minimize adverse effects from their primary action. Currently, benzbromarone and dicumarol reach high enough colon concentrations when taken in normal doses2. Dietary compounds may also bear antidote potential.

In summary, this study provides a high-resolution map of the direct effect of antibiotics on human gut bacteria (Suppl. Table 1) down to the level of individual drugs, species and some selected strains. Since not designed to establish translational relevance, future work will be needed to assess the generalizability of these findings, given the intraspecies variation among bacteria. Nevertheless, our results challenge the traditional view that antibiotics are bona fide bacteriostatic or bactericidal, as this hard division breaks in non-model bacteria. Antibiotics that preferentially kill some species may be most detrimental to our gut microbiota, although the first studies in limited numbers of healthy individuals point to the gut microbiota having some resilience against specific antibiotic regimens32. Understanding the underlying mechanisms for this selective killing might open up ways for the development of new antimicrobials and strategies for controlled microbiome modulation33. Overall, interactions of antibiotics and commensals merit deeper exploration, and we anticipate future studies on the variation of antibiotic susceptibility within individual gut microbiomes and its relation to drug use, as well as on the specific antibiotic mode(s) of action and resistance in gut commensals."

So at this point, ability to nullify the effects of antibiotics on the gut with other medications are still theoretical.

We each need to decide if the need to knock out MAC or Pseudomonas outweighs the side effects of the medications.

I took meds for over 18 months in 2018 & 2019, managed the side effects, and with reasonable precautions I have remained infection free for 4 1/2 years. I would do it again.

Sue

REPLY
@helen1000

Yes I am concerned about the side effects of Medication too. I am trying to find a way to avoid it, or at least reduce the side effects. It looks like medication weaken the immunity system and pick up other infection. If the doctor can also work on how to protect our immunity and liver function, more patients are willing to take the medication. 😉

Jump to this post

The damage MAC can do is much much worse than any side effects of these medications. In contradiction, being on the big 3 antibiotics actually decrease the chances for other infections.

REPLY
@helen1000

I changed my diet with more protein and vegetables esp avocado and gained about 5 lbs in the past three months ( BMI is 19.3 now - I was underweight in my whole life) though I have MAC progressing. That gives me the hope that I can improve my immunity system by excellent
nutrition and a healthy weight, not antibiotics.

Not sure whether I am correct.

Jump to this post

My immune (blood ) system shows perfectly fine. However, my lungs are shot. With each and every bacteria infection I get in my lungs, it does more and more damage. I eat healthy as well but it doesn't help with picking up these environmental bacteria if you have lung damage. MAC can colonize in your lungs. It goes dormant and then will kick up its ugly little head at the most inopportune time. However, by taking Azithomyzin 500 mg 3x per week I have not had it reappear since 2017. I have picked up many other environmental bacteria since then though. So many I finally quit asking what I had for a period of time. I do the sputum sample thing when I know I am sick , they tell me what to take, and I take it. I am back to asking again at this point.

REPLY
@helen1000

To fight against fatigue and maintain gut health, does anyone try IV therapy to boost immune system?

Jump to this post

My Dr. said make sure I take a Probiotic every day.

REPLY
@1fancydancer

My immune (blood ) system shows perfectly fine. However, my lungs are shot. With each and every bacteria infection I get in my lungs, it does more and more damage. I eat healthy as well but it doesn't help with picking up these environmental bacteria if you have lung damage. MAC can colonize in your lungs. It goes dormant and then will kick up its ugly little head at the most inopportune time. However, by taking Azithomyzin 500 mg 3x per week I have not had it reappear since 2017. I have picked up many other environmental bacteria since then though. So many I finally quit asking what I had for a period of time. I do the sputum sample thing when I know I am sick , they tell me what to take, and I take it. I am back to asking again at this point.

Jump to this post

Yes 1 fancy dancer, that is my concern as well. Even though I will be MAC free, I will pick up other bacteria, in a high possibility. Then the rest of my life will be on medication. We sometimes don't know what life will bring to us, truly! Stay strong!!!

REPLY
@suzyqueue

The damage MAC can do is much much worse than any side effects of these medications. In contradiction, being on the big 3 antibiotics actually decrease the chances for other infections.

Jump to this post

Suzqueue, I know I should take medication. But I am also afraid that I will pick up other bacteria even though I am MAC free.

REPLY
@sueinmn

Hi Helen - This paper was sponsored by the pharmaceutical company trying to decide whether to develop a drug for treating antibiotic effects on the gut biome.

I read the paper and concluded that the drugs under study are not on the market for treating antibiotic changes in the gut - they are under development, still in the lab/animal testing stage.

I found references to three drugs that were tried for this report, but each has its own side effects. Benzbromarone is used for gout, but it has the side effect of liver toxicity. Dicumarol is an anticoagulant - again with its own issues. Tolfenamic acid, sometimes used for migraines or arthritis, can be toxic to kidneys,

Here is their summary:
"Altogether, we provide a route for identifying antidotes that specifically mitigate the collateral damage of antibiotics on commensals, particularly on Bacteroides spp. This concept needs further development before any application — e.g. antidotes should be tested for dosing or formulation to optimize pharmacokinetics and minimize adverse effects from their primary action. Currently, benzbromarone and dicumarol reach high enough colon concentrations when taken in normal doses2. Dietary compounds may also bear antidote potential.

In summary, this study provides a high-resolution map of the direct effect of antibiotics on human gut bacteria (Suppl. Table 1) down to the level of individual drugs, species and some selected strains. Since not designed to establish translational relevance, future work will be needed to assess the generalizability of these findings, given the intraspecies variation among bacteria. Nevertheless, our results challenge the traditional view that antibiotics are bona fide bacteriostatic or bactericidal, as this hard division breaks in non-model bacteria. Antibiotics that preferentially kill some species may be most detrimental to our gut microbiota, although the first studies in limited numbers of healthy individuals point to the gut microbiota having some resilience against specific antibiotic regimens32. Understanding the underlying mechanisms for this selective killing might open up ways for the development of new antimicrobials and strategies for controlled microbiome modulation33. Overall, interactions of antibiotics and commensals merit deeper exploration, and we anticipate future studies on the variation of antibiotic susceptibility within individual gut microbiomes and its relation to drug use, as well as on the specific antibiotic mode(s) of action and resistance in gut commensals."

So at this point, ability to nullify the effects of antibiotics on the gut with other medications are still theoretical.

We each need to decide if the need to knock out MAC or Pseudomonas outweighs the side effects of the medications.

I took meds for over 18 months in 2018 & 2019, managed the side effects, and with reasonable precautions I have remained infection free for 4 1/2 years. I would do it again.

Sue

Jump to this post

Dear Sue, thanks a lot for your advice. I know that you are very knowledgeable and experienced. As I remember, you don't have cavity. Did you pick up other new bacteria after all the medication? I also have cavity, said toughest to cure and I also have to go through a surgery. So I try to equip myself as much as I can. I know all the possible side effects and I know I may be on medication in the rest of my life. I just want to know as much as I can so I can be prepared psychologically. 🙂

REPLY
@helen1000

Dear Sue, thanks a lot for your advice. I know that you are very knowledgeable and experienced. As I remember, you don't have cavity. Did you pick up other new bacteria after all the medication? I also have cavity, said toughest to cure and I also have to go through a surgery. So I try to equip myself as much as I can. I know all the possible side effects and I know I may be on medication in the rest of my life. I just want to know as much as I can so I can be prepared psychologically. 🙂

Jump to this post

As I mentioned, I have not had a recurrence of MAC or Pseudomonas. By doing airway clearance with 7% saline, I have avoided picking up any other lung infections, except once after a bad case of bronchitis - this was easily treated with a short course of steroids and antibiotics. This is NOT because I isolate myself - I am often with young grandchildren and other people in my over-70 age group all the time. My daughters who are nurses call both groups "Petri dishes for disease."

Having a cavity does not guarantee you will need surgery - often smaller cavities can heal during antibiotic therapy. But delaying taking antibiotics if you already have cavities is very dangerous - the larger the cavity grows, the more lung tissue you will lose in surgery.

While we hope for better solutions in the future, the best way to fight an extensive MAC infection in 2024 is the Big-3 antibiotics, Arikayce and daily airway clearance.

REPLY
Please sign in or register to post a reply.