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 | @helen1000 | Jun 18 10:07pm

Not a problem 🙂 actually NYU langone will start phage next year per my doctor , I hope they have a better progress! 😄

helen1000 | @helen1000 | Jun 19 1:14pm

Here are my airway clearance items for new comers:
1) Omron nebulizer
2) Aerobika
3) saline 7 percent

Twice a day, very happy with them 🙂 but it is a shame that I forgot to change the filter for my Omron for five months. After I changed it, the process takes only 10 mins. 🙂

Colleen Young, Connect Director | @colleenyoung | Jun 19 3:22pm

In reply to @helen1000 "Frankie 160, I wish you can try ginseng and ginger to help you warm the stomach...." + (show)

Hi all, I notice that several of you, including @helen1000 and others, have been posting published research about promising new treatments on the horizon.

Many of the veteran members of the MAC support group will remember @katemn when I say: It's imperative to do your "due diligence" and research reliable current information to be your best advocate for your health. Doesn't that sound like Katherine?

So, in this light, I would like to point out some important criteria when evaluating published research articles to understand if treatments may be right for you.

1. Take note of the date of the research. Was it published in the past few years or over a decade ago? Are newer updated results available?
2. What is the phase of the study? In vitro (tested in a petri dish) or in vivo (tested in mice) studies are not yet ready for use in humans.
Phase 1 human trials are also not ready for standard treatment for all patients. They're still testing the safety and efficacy of a treatment.
It isn't until phase 3 or 4 that a new treatment approach is being tested on a wider population and it's efficacy is likely beneficial.
3. Is the paper a case study? Case studies are used to document singular situations that MAY lead to further study interest. The hypothesis has not be tested and not yet replicated. Such is the situation with the article posted about Kampo. It is a case study only:
- Case Report: Kampo Medicine for Non-tuberculous Mycobacterium Pulmonary Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8601257/

Also note the disclaimer posted on the
"scientific literature databases offered to the public by the U.S. National Library of Medicine (NLM). NLM is not a publisher, but rather collects, indexes, and archives scientific literature published by other organizations. The presence of any article, book, or document in these databases does not imply an endorsement of, or concurrence with, the contents by NLM, the National Institutes of Health (NIH), or the U.S. Federal Government."

So, back to Katherine's statement. Do your due diligence. Research well and discuss with your doctor. Also remember the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/) which underline:
1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

irenea8 | @irenea8 | Jun 20 7:03am

In reply to @helen1000 "Not a problem :) actually NYU langone will start phage next year per my doctor ,..." + (show)

Can you provide more information about this? Which department and phage for which conditions?

helen1000 | @helen1000 | Jun 20 7:08am

My doctor told me this, it should be under NTM/ pulmonary disease program. 🙂 Let's keep watching for it.

In Belgium, they started with two patients but both failed, so the professor says if without progress, they probably will stop it.

helen1000 | @helen1000 | Jun 20 7:23am

In reply to @suzyqueue "I was to have the upper left lobe removed in 2018 and 2 weeks before my..." + (show)

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

helen1000 | @helen1000 | Jun 20 6:57pm

Here is an article from Nature Magazine - Unravelling the collateral damage of antibiotics on gut bacteria
https://www.nature.com/articles/s41586-021-03986-2
Does anyone has a subscription of Nature Magazine? I am curious what is their approach. 🙂 It is specifically for erythromycin.

helen1000 | @helen1000 | Jun 20 7:29pm

In reply to @helen1000 "Here is an article from Nature Magazine - Unravelling the collateral damage of antibiotics on gut..." + (show)

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.

sadies1mom | @sadies1mom | Jun 20 8:53pm

I have MAC nodules, not cavitary. My Internal Med dr. Encouraged the meds - says she has seen improvements in her patients who have been treated. I have known about my Mac – non-cavitary – for two years.
I've followed every tip I've been given except the medication and I am stable. If I were you, I would follow your doctor's advice.
You are young. I wish you good luck

helen1000 | @helen1000 | Jun 21 6:29am

In reply to @sadies1mom "I have MAC nodules, not cavitary. My Internal Med dr. Encouraged the meds - says she..." + (show)

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. 😉