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.

laureltn | @laureltn | Apr 14 9:44am

In reply to @kathyjjb "Thanks Laurel, Okay, so Customer service said it wasn't on Humana drug list. Ugh. Kathy" + (show)

I'm on Humana Value Rx in Tennessee and it is covered on the formulary. When I did my research, UHC, Humana and Cigna covered it, but Cigna dropped Vanderbilt from their pharmacies. I had Cigna when I was on Arikayce in 2023-24. Now, I'm on straight Medicare -- Plan G with Plan D supplement. I was diagnosed with BE/MAC accidentally and thankfully before I turned 65 so I knew I would want the strongest, most comprehensive Medicare coverage I could get. I'm grateful for that timing because I would have likely done an Advantage plan since I was healthy as a horse.

Maybe your doctor can can request an exception with Humana? Based on what I'm reading, it's at least possible to get a drug that's off formulary approved. If they deny the exception, you can then file an appeal of the denial. But also find out about any grants or assistance that may be available. Best of luck!!

laureltn | @laureltn | Apr 14 9:46am

In reply to @kathyjjb "Thank you. I've read that 1/3 of Medicare Advantage programs are paying for Arikayce. My options..." + (show)

I'm not sure if it helped at all, honestly, but I knew it didn't hurt. She said it would help, so I did it!

Good luck!
Laurel

kathyjjb | @kathyjjb | Apr 14 11:46am

In reply to @laureltn "I'm on Humana Value Rx in Tennessee and it is covered on the formulary. When I..." + (show)

Hi Laurel,
I may be wrong. I went on the Humana (Medicare advantage) website again and Arikayce was on there. What was confusing is there were 2 prices that was listed, 1 was about $15,700 and another was about $15,500. What I didn't see was a footnote that it could be covered and would require doctor submitting a request, and they would decide. So maybe I'll be okay? I have another appointment with ID doctor this week and I will ask her what she thinks. What else did you take besides Arikayce? I hear there's a study showing that Rifampin isn't needed with Arikayce? I have M. Abscesses, so treatment may vary. Amakacin is definitely needed for my bug. It has a fairly high susceptibility rating.
Thank you for the information,
Kathy

kathyjjb | @kathyjjb | Apr 14 11:55am

In reply to @malambrit "I have Cigna Health through my employer. I pray you can work it out for insurance..." + (show)

I had a number of people praying for me yesterday and I went back on the web site and missed a footnote that it "may" be covered if there's nothing else that can be used in it's place and it would require ID doctor to submit a request. So I am just going to be hopeful.
Are you taking Rifampin also? National Jewish is currently doing susceptibility testing and the genetic results predict Amakacin susceptibility. This confirms a previous test result showing S8 for Amakacin.
Thank you and good luck to you! My prayers are with you as well.
Kathy

laureltn | @laureltn | Apr 14 1:08pm

In reply to @kathyjjb "Hi Laurel, I may be wrong. I went on the Humana (Medicare advantage) website again and..." + (show)

Hi, Kathy! Well, in my portal it's a lot less (these are the yearly amounts based on the different pharmacies I have in in there):
Arikayce 590mg/8.4ml suspension
$1,649.95
$1,885.00
$1,894.80
$1,636.66
$1,737.80

BUT, wait and see how it all shakes out. Again, it's possible even if it's not covered you can get an exception. My situation was I had been on the Azithromycin, Ethambutol and Rifampin for like 14 months (converted, flipped back positive and languished). We dropped the Rifampin and added the Arikayce. I had asked my ID if we could because of them both potentially affecting hearing, and she agreed.

Good luck and let us know how it goes!

kathyjjb | @kathyjjb | Apr 14 3:02pm

In reply to @laureltn "Hi, Kathy! Well, in my portal it's a lot less (these are the yearly amounts based..." + (show)

Thanks Laurel, oh that's scary. Well I'll just see what happens.
My strain is completely resistant to Azithromycin. So, I will have to start with Arikayce. Thanks again. Kathy

laureltn | @laureltn | Apr 14 4:01pm

In reply to @kathyjjb "Thanks Laurel, oh that's scary. Well I'll just see what happens. My strain is completely resistant..." + (show)

Hang in there. I'n that case, your doctor should be able to make a strong case for an exception if it's not covered. Don't worry yet.
Laurel

kathyjjb | @kathyjjb | Apr 14 6:11pm

Thanks for the encouragement. I'm trying to stay hopeful.
Kathy

malambrit | @malambrit | Apr 14 7:24pm

In reply to @kathyjjb "I had a number of people praying for me yesterday and I went back on the..." + (show)

Kathy,
Yes, stay hopeful!! and prayerful!! I do take Rifampin, I'll read up on that study, thank you! Keep us posted. Traci

kathyjjb | @kathyjjb | Apr 15 10:36pm

Thanks Tracy! One more question, are you taking a 3rd medication? any side effects? I've had a rough past 2 weeks and meeting with ID doctor tomorrow and she may get me started.