Arikayce causing severe throat irritation/voice loss—help?

Posted by Dghjmnvhm @coco2023, Apr 28 5:04pm

I am currently being treated for NTM lung infection and one of my medications is Arikayce via nebulizer.

I am having severe throat irritation and voice loss. It has become bad enough that I’ve had to stop treatments for several days at a time just to allow my throat to recover.

I have tried lozenges, warm water, saltwater/baking soda gargles, and throat coating products, but nothing has made a meaningful difference.

Has anyone else experienced this with Arikayce? If so, were you able to find anything that helped you stay on treatment consistently?

I would greatly appreciate hearing what worked (or didn’t work) for others.

Interested in more discussions like this? Go to the Lung Health Support Group.

Dghjmnvhm | @coco2023 | Apr 28 5:06pm

Update: This is causing missed doses, which I’m concerned about given how important consistency is with treatment.

Dghjmnvhm | @coco2023 | Apr 28 5:14pm

In reply to @coco2023 "Update: This is causing missed doses, which I’m concerned about given how important consistency is with..." + (show)

@coco2023
The treatment drug I’m referring to is Arikayce (inhaled amikacin, liposomal form).

stevelc | @stevelc | Apr 29 8:40am

The first thing I found when looking at this medication is that it is a “black box warning” prescription. I would recommend that you discuss this with your pharmacy and seek alternative medication. If you are not being treated by a pulmonologist, I would advise that you get one.

notnancy88 | @notnancy88 | Apr 30 7:15am

I am on this drug treatment along with 100 mg clofazamine and 600mg linezolid. The loss of your normal voice etc disappears after about six days. At least it did for me. My pulmonologist ordered drug sensitivity testing using my sputum samples. Amakacin and this form of it Arikayce is very effective against the M. Abscessus in my lungs.

Dghjmnvhm | @coco2023 | May 2 7:46am

In reply to @notnancy88 "I am on this drug treatment along with 100 mg clofazamine and 600mg linezolid. The loss..." + (show)

When you say you lost you voice for about 6 days; did you just continue treatment or did you take a few days off and restart?
I will start treatments for 3 or 4 days. Then loose my voice, have severe dry throat, some swelling (feels like there's a lump in my throat). This makes taking pills difficult. It takes several days for my throat to recover. The I'll restart treatment, only to have the same side effects to reoccur.

Sue, Volunteer Mentor | @sueinmn | May 2 8:30am

In reply to @coco2023 "When you say you lost you voice for about 6 days; did you just continue treatment..." + (show)

@coco2023 Can you talk to your doctor about a lower dose?

Dghjmnvhm | @coco2023 | May 2 1:28pm

In reply to @coco2023 "@coco2023 The treatment drug I’m referring to is Arikayce (inhaled amikacin, liposomal form)." + (show)

@coco2023
Here’s a version written fully in Sherri’s voice, clear, detailed, and ready for a patient forum. Plain text, no formatting:

I forgot to mention one other side effect I’ve been dealing with from the Arikayce treatments. I’ve had a persistent case of cheilitis at the corners of my mouth. It clears up on my days off, but as soon as I start treatments again, it comes back within one or two doses. I don’t use a mask, and we’ve already ruled out the mouthpiece, so it’s not from anything rubbing or irritating the skin. It’s definitely from the Arikayce mist itself. At this point it’s a repeating cycle, and I’m wondering if anyone else has had this happen and what helped you manage it.

notnancy88 | @notnancy88 | May 2 5:22pm

In reply to @coco2023 "When you say you lost you voice for about 6 days; did you just continue treatment..." + (show)

@coco2023 no. I took a break and when I restarted, I did not have the same symptoms. I only did the treatment once a day. The pulmonologist’s nurse told me to gargle with warm salt water.