Arikayce

The medical literature (and my ID dr. At Mayo) recommend 18 months after conversion. So I’m staying on it. I’m also continuing with the Big3. Yes, I have fatigue but I keep going right through it. The arikayce for me is worth it.

Are you taking other antibiotics as well--the big three for example

Good for you for hanging in there!
Getting through the 18 months was hard but I ve stayed negative a year off meds

Maybe those who cannot tolerate the daily Arikayce can tolerate the three times weekly? I do it three times a week along with Azithromycin and Ethambutol and am doing fine.

I have read that some people experience severe throat soreness, coughing, lung exacerbations, etc.. while on Arikayce. I just had a thought. Secretory IgA is an immunoglobulin that is found lining the gut, lungs, etc… and helps to protect it. Some people have low levels. It can be tested. Again- just putting this out there- colostrum powder supplements are known to increase the IgA levels, among doing a number of other things. I can attest to this because years ago, I had a really thorough GI testing for gut microbes, etc.. I was found to have low IgA levels. Never thought much about it until my pulmonologist, for research purposes, checked all of my immunoglobulin levels. I have been using the colostrum powder every day for a year and a half. I have had absolutely no GI complaints on any of these meds. More importantly, my IgA levels are now at the top of the range.

Mind you, I also take a really good probiotic blend (several), and that may play a part, but most of our immune system is in our gut, and what I have been doing has helped me and enabled me to continue these meds with minimal to no side effects, and I have always had a sensitive system.

Just a thought.

I did my thing withArycase and I found it to do nothing! But that’s just me.

To: @pagechapman chapman and other members who are taking Arikyace.
Fr: @frankie160
I have found Arikyace to be a harsh drug so agree with those who feel the same way. Yet the drug is easy to administer and quite effective in my case. The side effects have been an increase in the shortness of breath and a horse throat.
I have been taking the Big 3 since September, 2022 with manageable side effects and started Arikyace on July 12, 2023 and by August I had my first negative culture and 2 more negative cultures until recently when I went positive again. Doc is hoping it is just a fluke. Results of the new culture to follow in another 6 or 7 weeks. So my MAC is sort of on the right path...and as our mentor and health care providers always say we are all different and never the same when it comes to side effects.
I have had constant serious coughing while nebbing Arikyace until the ID Doc suggested I use Albuterol, small amount beforehand, and the horrible coughing has subsided some but not completely gone. I'm now on a two week holiday from Arikyace to see if the voice changes I have had since beginning the med improve a little otherwise, I will need a biopsy of my vocal cords to make certain no other issue is brewing. Hang in there you all and please continue to be active here.

I agree with you. After 6 months on Azithromycin and Ethambutol, I was reduced to a few stubborn colonies on culture with a negative smear. My doctor added Arikayce after the 6 month mark, and in less than 1 month, I cultured negative. So far negative for 5 months with no negative drug side effects.

At the time, rules were that you had to have been on standard treatment for 6 months before adding Arikayce. That has changed or will change to allowing Arikayce as a first line treatment along with the standard regimin (not alone). Then it is 18 months after sputum conversion.

The change in the rules will allow for earlier sputum conversion, so if you are offered the opportunity to add Arikayce and can tolerate it (I do 3 times weekly, and doctors will work with you on the frequency. It does not have to be every day), then try it.

This is a stubborn and resilient bug. Rest, good diet, and added supplements will help you fight it and withstand the treatment, but those measures are simply no match. The other necessary treatment is twice daily nebulizing with hypertonic saline (7% is best) along with an Aerobika or other device to help bring up the mucus. Many people have been able to keep from going on meds and keeping their numbers almost undetectable by simply doing daily, rigorous airway clearance and properly disinfecting equipment after each use.

The way I see it is that this bug damages the lungs, and the sooner it is eliminated, the less likely damage will continue. Then airway hygiene twice daily with sterilizing equipment and other measures to avoid or reduce reinfection is a proactive and easy way to keep healthy. Don’t be afraid of the meds. Many people have no problems with them. Those who experience some issues can work with their doctors to find meds they can tolerate. If you don’t have cavities, you will do a three day a week regimin. The earlier you treat, the less likely you are to develop cavities.

Don’t let treatment fear paralyze you. Be as proactive as you can be, under your individual circumstances. Get to a center of excellence or find a good team of doctors who will work with you, and do what is needed to eliminate this bug.

Before I began treatment, I felt that it was pointless to treat, if it was just going to end in later reinfection. Then I read so many accounts of people who, by continuing airway clearance, sterilizing equipment, and being sensibly cautious about re exposure, have been able to remain sputum and culture negative.

Don’t let fear rule your decision. Reach out for encouragement.

I've been on Arikayce for 4.5 years. How "quickly" it works depends on the person and the strains of MAC they are dealing with along with any cavitation. It shrunk my cavity from 10 cm to 4 and has kept me stable.

Thank you so much for that insight. You have been on the Arikayce for quite some time. I am so happy that it has kept you stable.

Do you foresee being able to discontinue the med, and are you using it daily or three times weekly? You seem to be tolerating it well!

I started on it every day for the first 2 or so years. Now I do 3 times a week.
I started with the side effects that everyone seems to start with but they eventually subsided. I found doing the treatment before bed and gargling with the warmest water possible afterwards helped with resting vocal chords through the night. I still cough a bit through the treatment but it has its advantages in helping to clear lungs too.