Starting Arikayce - nervous

I started on the 2 vs 3 trial in late March 2023, taking Azithromycin and Ethambutol on MWF. At the time, my sputum smear was positive at +3, and my culture was positive for Mycobacterium intracellulare at sometimes +3 and sometimes +4. I had done the clinical trial of only Clofazimine for 6 months with 4 months of 200 mg daily followed by 2 months of 100 mg daily.

While on the 200 mg of Clofazimine, I felt very well, and numbers began declining. Once I dropped to the 200 mg last 2 months of the trial, my numbers jumped back up, and I began to really feel symptoms. For some reason, Clofazimine was not really helpful for me.

When I started the Azithromycin and Ethambutol on MWF, after the first month, my numbers dropped dramatically. They continued to drop over the next 5 months with my sputum smear staying negative, and my culture showing only several colonies. At the six month mark of the 2 vs 3, my doctor started the paperwork to begin Arikayce MWF. At the time, you had to be on the other drugs for at least six months before being allowed to add Arikayce.

I have been on Azithromycin and Ethambutol since early October 2023. After one month, I was smear and sputum negative and have remained so for 6 months. Pretty miraculous.

The only side effect from the Arikayce for me is extreme fatigue. I do feel that my airways are a bit more sensitive, but not much. I gargle with warm water and swish my mouth well after using it. I used Levalbuterol puff followed by nebulizing 7% saline and using the Aerobika with Active Cycle of Breathing first. I follow that with the Arikayce nebulizing and then take my Azithromycin and Ethambutol immediately after sterilizing everything. I then go to bed. Those days are only MWF. All of her days are just nebulizing and saline twice daily. It can be inconvenient, but it is doable. I always wait for theee hours after eating supper before doing airway clearance and then taking meds. I take the meds in an empty stomach and have been fine. Going to bed immediately allows me to sleep through any effects.

You can do this!

My doctor was really pleased and surprised at how well I have done. Prior to treatment, I had some episodes of significant hemoptysis. The first time I used Arikayce, I had a trace of blood in my sputum, but that is all, and I have had absolutely none since.

I would encourage you to try the Arikayce.It really is a game changer. You need to attack this bug on all fronts because it does damage to your precious lungs. I also boil my drinking water, no longer shower (shallow baths now), mask in public, and sterilize my equipment from nebulizing and using the Aerobika twice daily.

I take multiple probiotics and use powdered colostrum for my gut. I have no nausea, headaches, nothing. My hearing did decline, and I now wear hearing aids, but it has been stable with no more decline, and for me, it is a small price to pay forgetting well. I get eye checkups every 3 months due to Ethambutol, and all is fine.

My doctor wants me on all three meds for 18 months after the first negative culture. I now have one more year.

If I had been able to get in with a good doctor and been properly evaluated in the spring of 2022, I would have begun treatment immediately. It was hard to get a pulmonologist appt then, and the one I got did nothing to help. It was almost 5 months from my first hemoptysis before I met my current doctor, and during that time, a lot of damage was done.

Don’t wait to start treatment. Find medications that work for you, do your daily airway hygiene and clearance, and be reasonably careful with your exposures. The meds are tolerable. You can do this. Don’t be afraid of the meds. This is one of those instances when eating well and exercising and taking supplements is not enough to cure this. Those things will help you to tolerate the meds and to regain your health, but the meds need to be the cornerstone. This bug is highly resistant and needs to be treated very seriously with big guns. B

Laura, I was the same by month 5, stopped at 4 1/2 months. Still have dizziness effects from the Amikacin iv and inhaled Arikayce years later. -Rick

Those vials are difficult to open. The tin ring breaks every time, have to use pliers

Formergardner,

Do you do nebulized amikacin and still had hearing loss? I'm sorry to hear this. I thought the hearing loss was more with injections, but I also know other antibiotics can cause hearing loss.

I am having my hearing checked frequently while on the amikacin in hopes that they can detect hearing loss if it starts occurring. But I know it's a risk.

Best to you,
Mokie

I was on Arikayce for 8 months but had to get off of it because of a terrible cough and lightheadedness. Not everyone has these problems but they do happen. I can say that the support team is fabulous and you can always get in touch with someone if your rep isn't available. The Occupational Therapist that came to my house was wonderful. She spent a long time with me and made sure I understood everything I needed to do. She also called me about every 2 months in addition to my rep. I can't say enough about the support people that Arikayce has. Good luck taking the medicine and I hope you do well.

My hearing loss actually began after 5 months on the Azithromycin. Then it worsened when I began the Arikayce.

I did read somewhere that sometimes susceptibility to hearing loss from antibiotics can be genetic. One of those things that needs to be screened for.

My hearing loss is not profound. I can easily hear and understand speech. My issues come more now with television and also radio in the car with background noise from the road.

I was more concerned with lung health and surviving this disease than with needing hearing aides, to tell the truth. They are comfortable, and I don’t need them to function in life. I was advised that cognition can be affected if hearing loss is not addressed and that tinnitus is the body’s way of compensating for sounds not heard.

Many drugs can affect the tiny hairs in the ears. The MAC drugs are not the only ones.

Thank you so much for going into more detail about the hearing loss. This was the main reason I rejected amikacin several years ago. My doctor at the time didn't have much information on hearing loss. I did not know about the genetic element. Your insight is very helpful.

Gratefully,
Mokie