Arikares concerns

Posted by at.the.boardwalk@comcast.net @beachbum1945, Mar 14 11:05am

I had no symptoms when diagnosed with bronchiectasis and MAC but was put on 3 antibiotic regime for 18. My infection cleared and I had no side effects. Two years later started coughing up blood, had a CAT scan and given antibiotic to clear up but it always would come back, A new infectious disease doctor determined I hadn’t been on a strong enough regime of antibiotics at that time so now back on big 3 again, but the doctor wants to put me on the Arikares treatment as well. After reading the welcome package I am very concerned about the side effects, especially coughing up blood. The respiratory consultant said biggest side effect is a horse voice and fatigue. Fatigue and stomach issues already exist with antibiotic regime so I am concerned how much more I can handle. Would the addition of this treatment eliminate the mac infection so that it never returns. If that is not the case, why bother adding it. I am a caregiver to my 91 year old husband so any extra free time is very valuable to me. Could anyone tell me their experience with this Arakaris treatment

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

wolfplanetzero | @wolfplanetzero | Mar 16 4:27pm

In reply to @laborday24 "They want me to start arskayce because infusions caused hearing issues. Am concerned about cost. Am..." + (show)

If you can't afford Arikayce, the cheaper alternative is to mix amikacin with .9 percent saline and nebulize it. Good luck.

tte | @tte | Mar 17 2:00pm

In reply to @laborday24 "They want me to start arskayce because infusions caused hearing issues. Am concerned about cost. Am..." + (show)

I am only on 3 oral antibiotics: rifampin, ethambutol, and azithromycin.
I have not received intravenous. Re: my cost of Arikayce (in USA), First you must get it approved by your insurance plan. Mine was denied first & my doctor appealed it. If you are a senior on a medicare part D drug plan in USA, the most you will have to pay is $2,000 out of pocket max for the year. This just started in 2025. You can also fill out a form with your part D drug plan to pay the $2,000 in payments over a year (approx. $166 per month). There are some patient assistance funds, google "Arikayce financial assistance".

laborday24 | @laborday24 | Mar 18 4:46pm

In reply to @tte "I am only on 3 oral antibiotics: rifampin, ethambutol, and azithromycin. I have not received intravenous...." + (show)

Thank you for info. My id Dr is upset about how much it costs. Prayers for your journey ❤️

tte | @tte | Mar 18 5:03pm

In reply to @kimba78 "P.s. I just got tested after a year so far on meds. I am not coughing..." + (show)

@kimba78, I was diagnosed with MAC May 2024, been on the Big 3 since May 24, 2024. I just started Arikayce March 7th, 2025. But, I do show a lower bacterial load per Dr. McShane in Tyler , TX ( but she's moving to be with the National Institute of health in Washington D.C.) And my CT scan has a lot less nodules. Fingers crossed.

wolfplanetzero | @wolfplanetzero | Mar 18 5:23pm

In reply to @tte "@kimba78, I was diagnosed with MAC May 2024, been on the Big 3 since May 24,..." + (show)

My Medicare Part D wouldn't pay for Arikayce, but it does cover nebulized amikacin, so I'm going with that route. 1 ml amikacin is blended with 3 ml of .9 saline, per treatment. Arikayce would be a batter choice if you can swing it since it's optimized for nebulization, but there is a more affordable alternative.

laborday24 | @laborday24 | Mar 19 7:18pm

In reply to @wolfplanetzero "If you can't afford Arikayce, the cheaper alternative is to mix amikacin with .9 percent saline..." + (show)

Thank you

irene5 Irene Estes | @irene5 | Mar 20 7:56am

In reply to @wolfplanetzero "My Medicare Part D wouldn't pay for Arikayce, but it does cover nebulized amikacin, so I'm..." + (show)

There is a program you can possibly apply to. I was in it and paid 0$ for Arikayce. It was $11,000 a month. I don’t have the info in front of me at the moment but will try to look later today . Your ID doctor might know about it. Irene5

Rick | @rstel7272 | Mar 21 7:16am

In reply to @irene5 "There is a program you can possibly apply to. I was in it and paid 0$..." + (show)

https://www.arikayce.com/resources/patient-support/

irene5 Irene Estes | @irene5 | Mar 21 7:53am

In reply to @rstel7272 "https://www.arikayce.com/resources/patient-support/" + (show)

Thanks Rick!! Busy day yesterday. Much appreciated! Irene

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