1. < MAC & Bronchiectasis

Starting Arikayce - nervous

Posted by rits @rits, Jul 6, 2019

Hi All. I have been lurking here for a while and have learned a lot.

I was diagnosed with slow growing MAC several months ago.. I am being treated by a University of Chicago pulmologist who specializes in bronchiectasis and ntm . She's terrific and if anyone is looking for a specialist in the Chicago area, I would gladly recommend her. She started me on the 3 antibiotics and told me to bring in a sputum sample every month. I had to stop Rifampin due to severe abdominal pain. Apparently, patients have been doing just as well on Azithromycin and Ethambutol and trials are underway to determine whether Rifampin is needed. While it is too late to enroll me in the trial, my doctor is confident that I will do just as well without the Rifampin as with it. (She is currently running 4 different studies, has a resident and a Fellow assigned to her and, most important, I trust her.) My 2x a day airway clearance consists of a percussion vest, an aerobika and 3% saline (I can't tolerate 7%).

MAC has shown up in all 5 of the samples I have brought in so far. Sadly, the June sample also showed moderate pseudomonas along with at least two other bacteria. In the last two weeks, I had a pft (pulmonary function test) with 6 minute walk, a ct scan and a bronchoscopy with biopsies of a suspicious area in my right upper lobe. I am in the start up phase of Arikayce which hopefully will take care of the MAC, the pseudomonas and all the other nasty stuff (fingers crossed). I have spoken to a rep of the specialty pharmacy and verified insurance. My assigned coordinator sent me a welcome package and called yesterday. Once the medication has arrived (which should be soon), a nurse will come out to set me up and I will do the first dose in her presence.

I am very nervous with respect to the possible side effects. I remember reading in a discussion or two here a mention of Arikayce but I can't find it. I would love to hear from anyone who is taking this drug. Did you suffer any of the side effects? I understand that hoarseness is a common side effect but I am more worried about bronchospasm and coughing up blood.

Thank you for any personal experience with this drug.

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

toms1982 | @toms1982 | Apr 13 9:02am

I originally started taking Arikayce by IV and within three days it was shutting down my kidneys so they took me off it. Then they started me on the inhalation version of the drug so it would bypass my kidneys and get directly to my lungs. I took it this way for 2 1/2 months until my lungs had an adverse reaction to the drug and it put me in the hospital. During the the time I took the inhalation version I did have side affects as well, I often coughed a lot after taking it, had nausea and vomiting often and often coughed up blood. needles to say I was kinda of glad to be off it all together. Once last thing the IV version caused permanent damage to my kidneys.

REPLY
1 reply
kathyjjb | @kathyjjb | Apr 13 9:37am
In reply to @laureltn "My voice came back around a month into treatment, as I recall, and I never had..." + (show)
@laureltn

My voice came back around a month into treatment, as I recall, and I never had any more problems with hoarseness. I started in April of 2023 and completed successful treatment June of '24. Everyone is different, but hopefully you will get yours back as well. I assume your trainer told you about gargling with warm salt water after you finish nebulizing the Arikayce? I did that during that month, but honestly once my voice came back, I didn't need to anymore.

Good luck!
Laurel

Jump to this post

I have a Medicare supplement plan and have heard that some insurance companies have high co pays and possibly some won't pay for Arikayce. What is your experience? I called my insurance company and I was told it wasn't on their drug list. Hopefully, the customer service agent was just referring to drugs sold at pharmacies.

REPLY
1 reply
laureltn | @laureltn | Apr 13 10:38am
In reply to @kathyjjb "I have a Medicare supplement plan and have heard that some insurance companies have high co..." + (show)
@kathyjjb

I have a Medicare supplement plan and have heard that some insurance companies have high co pays and possibly some won't pay for Arikayce. What is your experience? I called my insurance company and I was told it wasn't on their drug list. Hopefully, the customer service agent was just referring to drugs sold at pharmacies.

Jump to this post

Every year at open enrollment I look and check to be sure the plan I have and/or am considering for the coming year will cover the medications that I might possibly need, as well as the pharmacies (in my case, Vanderbilt Specialty Pharmacy). I had to change drug plans to get Arikayce in my formulary, but it was before I was on it.

With the catastrophic coverage cap at $2000, as long as the drug is in the formulary, that will be the maximum you will pay per year for all medications out of pocket. I know that's still not chump change, but when I was on it Arikayce you paid 5% with no max and if I hadn't qualified for The Assistance Fund, my out of pocket would have been around $13K as I recall. If you do go on it, your provider should be able to help you see if you qualify for assistance.

But yes, every year, check and see what's in the formulary when you use the online tool in Medicare. It's my understanding -- but I'm not an expert or professional -- that if a drug is in the formulary when you sign up and you're on it, even if they drop it midyear you will still be covered. But again, I'm not 100% on that.

Good luck!
Laurel

REPLY
1 reply
kathyjjb | @kathyjjb | Apr 13 11:34am
In reply to @laureltn "Every year at open enrollment I look and check to be sure the plan I have..." + (show)
@laureltn

Every year at open enrollment I look and check to be sure the plan I have and/or am considering for the coming year will cover the medications that I might possibly need, as well as the pharmacies (in my case, Vanderbilt Specialty Pharmacy). I had to change drug plans to get Arikayce in my formulary, but it was before I was on it.

With the catastrophic coverage cap at $2000, as long as the drug is in the formulary, that will be the maximum you will pay per year for all medications out of pocket. I know that's still not chump change, but when I was on it Arikayce you paid 5% with no max and if I hadn't qualified for The Assistance Fund, my out of pocket would have been around $13K as I recall. If you do go on it, your provider should be able to help you see if you qualify for assistance.

But yes, every year, check and see what's in the formulary when you use the online tool in Medicare. It's my understanding -- but I'm not an expert or professional -- that if a drug is in the formulary when you sign up and you're on it, even if they drop it midyear you will still be covered. But again, I'm not 100% on that.

Good luck!
Laurel

Jump to this post

Thanks Laurel,
Okay, so Customer service said it wasn't on Humana drug list. Ugh.
Kathy

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1 reply
kathyjjb | @kathyjjb | Apr 13 1:05pm
In reply to @malambrit "Hi, I started Arikayse a little over a week ago. After 3 days, I have all..." + (show)
@malambrit

Hi, I started Arikayse a little over a week ago. After 3 days, I have all but lost my voice and I have to talk to customers and employees ALL DAY! From everything I have read, this is temporary?? At this time, it's the only real side effect. Praying this gets me over the finish line to a negative culture.

Jump to this post

Hi, my insurance says my cost for Arikayce is almost $16,000.00. Amikacin isn't on list. I'm on a medicare supplement plan. To change plans mid year, I will need to relocate-probably out of state. Can you (if you are on a supplement plan) or anyone suggest which insurance companies to look at? Amikacin is the drug that I need to have any chance of beating this. Thank you.

REPLY
1 reply
malambrit | @malambrit | Apr 13 5:33pm
In reply to @toms1982 "I originally started taking Arikayce by IV and within three days it was shutting down my..." + (show)
@toms1982

I originally started taking Arikayce by IV and within three days it was shutting down my kidneys so they took me off it. Then they started me on the inhalation version of the drug so it would bypass my kidneys and get directly to my lungs. I took it this way for 2 1/2 months until my lungs had an adverse reaction to the drug and it put me in the hospital. During the the time I took the inhalation version I did have side affects as well, I often coughed a lot after taking it, had nausea and vomiting often and often coughed up blood. needles to say I was kinda of glad to be off it all together. Once last thing the IV version caused permanent damage to my kidneys.

Jump to this post

I have been nauseous the past few days. I had not seen that as a side effect so I thought I may have something else going on!

REPLY
malambrit | @malambrit | Apr 13 5:36pm
In reply to @kathyjjb "Hi, my insurance says my cost for Arikayce is almost $16,000.00. Amikacin isn't on list. I'm..." + (show)
@kathyjjb

Hi, my insurance says my cost for Arikayce is almost $16,000.00. Amikacin isn't on list. I'm on a medicare supplement plan. To change plans mid year, I will need to relocate-probably out of state. Can you (if you are on a supplement plan) or anyone suggest which insurance companies to look at? Amikacin is the drug that I need to have any chance of beating this. Thank you.

Jump to this post

I have Cigna Health through my employer. I pray you can work it out for insurance to assist. Best,

REPLY
2 replies
ana323 | @ana323 | Apr 13 5:40pm
In reply to @britchic "I’m curious what brand of probiotics do you take? And you mentioned powder colostrum. I worry..." + (show)
@britchic

I’m curious what brand of probiotics do you take? And you mentioned powder colostrum. I worry about my gut biome being on antibiotics for 2 years now. I too have noticed a loss of hearing and plan on getting this checked. I have been in the big 3 but unable to tolerate the riampin was put on aricayce but that made me cough more and did not seem to be working. I’m now on clofazamine which seems to be helping but have to get a ecg once a month 😮 just developed a uti and yeast infection so guess what? More antibiotics 😩 so am looking for a good quality probiotic.

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Another great resource and support is "Lung Matters" Facebook group. My pulmonologist/infectious disease doctor suggested I visit their page. I take the big 3 and one of the administrators of their page suggested Florastor daily probiotic supplement. It's worked great for me. Best to you.

REPLY
malambrit | @malambrit | Apr 13 5:40pm
In reply to @laureltn "My voice came back around a month into treatment, as I recall, and I never had..." + (show)
@laureltn

My voice came back around a month into treatment, as I recall, and I never had any more problems with hoarseness. I started in April of 2023 and completed successful treatment June of '24. Everyone is different, but hopefully you will get yours back as well. I assume your trainer told you about gargling with warm salt water after you finish nebulizing the Arikayce? I did that during that month, but honestly once my voice came back, I didn't need to anymore.

Good luck!
Laurel

Jump to this post

Thank you!! I don't recall about gargling with warm salt water but will be trying that next treatment.

REPLY
kathyjjb | @kathyjjb | Apr 13 8:37pm
In reply to @malambrit "I have Cigna Health through my employer. I pray you can work it out for insurance..." + (show)
@malambrit

I have Cigna Health through my employer. I pray you can work it out for insurance to assist. Best,

Jump to this post

Thank you. I've read that 1/3 of Medicare Advantage programs are paying for Arikayce. My options to change are wait until January 2026 or move out of State.
Pretty grim.

REPLY
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