Vertigo from Arikayce?

I’ve been on Arikayce for at least 2 years. A couple of months ago I got really bad chest pains (Bronchospasm - their most common side effect). I stopped for a week and the pains went away. Then I tried 3 days a week, then I went to every other day and now I’m back on daily. Will see what happens.

@mjb24 Just so you know - one version of the flu that is going around now is causing vertigo in a lot of people I know.

Your ENTs statement that since Arikayce hasn’t bothered you in the first 18 months it isn’t likely the cause of your vertigo seems suspect. If I were you, I would ask your prescribing doctor for blood work to test the accumulation of amikacin. It’s done regularly with IV Amikacin, but as far as I can tell rarely if ever done with Arikayce given Arikayce is inhaled and not systematic (though I believe it is still recommended to check accumulation levels every 3 months with Arikayce, I just don’t think anyone is doing that, not that I am aware of). The average time to ethambutol related vision loss is something like 285 days. A NJH specialist reported it at a recent conference. It’s an accumulation issue. I think it is misguided to think that the passage of time reduces risk from these antibiotics. I also wouldn’t trust the opinion of anyone without extensive experience with these drugs and the protocols for MAC. I am on Arikayce and in my experience no one has any real knowledge about it other than my NTM specialist.

I apologize, I should have updated my post earlier especially for anyone concerned about side effects. I did have the testing done and was told that the vertigo was caused by displaced crystals in my ears and not the Arikayce. I went back on the Arikayce daily and have not had another episode. I still question the reason, however as I had only the one episode. They asked me to come back for exercises to reposition the crystals which I declined since it had passed and there was no reoccurrence. Thank you all for your input.

@mjb24 Has anyone checked your hearing.? Sometimes They are related to each other. I am a speech pathologist who is just starting arikayce and am concerned more about hearing Although they indicate hearing loss is greater with IV amikacin. Definitely check with an ENT

Hope this helps

@mjb24 BPPV usually resolves on its own or try the Epley maneuver.

@bailey1 Yes, the testing I had done was at the ENT and no hearing loss, no sign of toxicity from Arikayce. He said it was displaced crystals in the inner ear. I hope the Arikayce is effective for you, many on this group have had good results after starting it.

@reneemc It went on for hours, until I called my PCP and got a prescription for dizziness and nausea. The dizzy pill worked and no more episodes so I guess it just resolved itself. Thankfully!! Thanks!

@mjb24 could you please send the name of the medication for the dizziness ? I also have the dizziness but never thought about Arikacy could be the cause. Thanks!

@swang18 The medication she gave me for the dizziness was Meclizine 12.5 mg tablets. Best of luck!