Starting Arikayce - nervous

Posted by rits @rits, Sat, Jul 6 6:21pm

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.

@rits….don’t worry about Arikayce……I’ve been taking it daily since November 12 along with the big 3 and no adverse side effects….a slight sore throat at first but this delivery system is so much better for us than other forms of amikacin…..I had been receiving amikacin through an IV before I started Arikayce and that did make me dizzy….and weak. I thank God I don’t need to have that drug in my bloodstream anymore.

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Thank you! This is what I hoped to hear. All the steps before starting plus having a nurse present for the first dose, tells me that this is a serious drug. I hope it works for you – and for me too.

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Rits. I am seeing my doc tomorrow and will begin the necessary steps for using the Arikayce. Thanks for your info and I hope you will post as you progress with the treatment. I have already checked with my insurance and they do not cover it. I will need to go through the manufacturer’s process to find out the cost. Best to you

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Sounder, I am thrilled to have someone going through this with me. I have Medicare which apparently will cover it. I 'm waiting to hear what my copay will be.

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Rits. I also have Medicare and a blue cross blue shield of RI supplement and something called Silverscript for my prescriptions. Costs quite a bit per month and the coverage is nowhere near as good as what I had thru’ my employer. But alas, I had to go part time because of the MAC and bronchiectasis as well as a heart condition and so lost the full time coverage. I will definitely keep you posted as I progress along the Aricayce treatment. I am also currently beginning to use the 3.5 saline nebulizer. My insurance did not cover the saline… only the nebulizer and so I ordered the saline on Amazon.

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Sounder, I get my health insurance through a pension fund. I believe my copay for a specialty drug is $50 per month but, if I'm wrong and it"s a lot more, I will be applying for the manufacturer's program as well.

I get 3% saline from Walgreens for around $15.50 per month through a rx prescription drug program my doctor"s nurse enrolled me into. Walgreens price without this insurance was around $26.

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I read with interest about the 3% saline from Walgreens for 15.50. I too buy that at Walgreens in Bartlesville, Okla and they charge me 30 plus dollars for a month. Can you tell me thename of the prescription drug program and if it's open to the public? Thanks so much

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Aunt Nanny, the nurse sent me a link to a coupon which I printed and brought to Walgreens. It is a Goodrx discount drug coupon for 60 vials. There is info for the pharmacist: member id, rxgroup, rxbin and rxpcn. It says that the coupon"displays a contracted rate based on agreements between your pharmacy… and a pharmacy benefits manager." It has no fees or obligations and is free to use.
I can send you the numbers but I think they might be specific for my prescription. Let me know if you want them. When I refilled the prescription, I did not need another coupon.

Customer questions: 855-426-4465
Pharmacist questions: 855-782-3703
Website: goodrx.com

I can't see why this program wouldn't work for you too.

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rits….. thank you — I printed the coupon and will take it to Walgreens — hope they honor it. Thanks again

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@sounder27

Rits. I am seeing my doc tomorrow and will begin the necessary steps for using the Arikayce. Thanks for your info and I hope you will post as you progress with the treatment. I have already checked with my insurance and they do not cover it. I will need to go through the manufacturer’s process to find out the cost. Best to you

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Hi Sounder. I have been busy with Arikayce! My doctor was required to fill out more paperwork (prior authorization) for my Part D insurer but they did authorize coverage. My copay is reasonable and I did not go through the screening for the manufacturer's pay assistance. A huge box with the drug and other material arrived this morning and the nurse was available to start me up tomorrow. However, I need to shop for a few required items. Also, I prefer not to do my first alone treatments on the weekend when it would be impossible to contact my doctor if something goes wrong. I am starting on Tuesday morning.
Where are you in the process?

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@rits

Hi Sounder. I have been busy with Arikayce! My doctor was required to fill out more paperwork (prior authorization) for my Part D insurer but they did authorize coverage. My copay is reasonable and I did not go through the screening for the manufacturer's pay assistance. A huge box with the drug and other material arrived this morning and the nurse was available to start me up tomorrow. However, I need to shop for a few required items. Also, I prefer not to do my first alone treatments on the weekend when it would be impossible to contact my doctor if something goes wrong. I am starting on Tuesday morning.
Where are you in the process?

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Rits. I am a bit behind you. My doc filled out his paperwork but didn’t get my signature and so is snail mailing it to me and I will bring it back to him. I will be several weeks behind you I think. I understand what you are saying about wanting to begin the medication when you are able to reach your doc easily. I live alone and feel the same way. I will let you know about my qualification for coverage. My part d prescription plan does not cover the Aricayce

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@sounder27

Rits. I am a bit behind you. My doc filled out his paperwork but didn’t get my signature and so is snail mailing it to me and I will bring it back to him. I will be several weeks behind you I think. I understand what you are saying about wanting to begin the medication when you are able to reach your doc easily. I live alone and feel the same way. I will let you know about my qualification for coverage. My part d prescription plan does not cover the Aricayce

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Once the money gets taken care of it moves really fast.

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I started on the inhaled Amikacin/Arikayse in Feb. I had some voice changes that corrected themselves within a couple weeks. I did cough a lot during treatment but that subsided too. No coughing up blood or any of the other scary stuff. Doing the Arikayse treatment after nebulizing any Albuterol and Saline is what helped me stop coughing so much because everything was all opened up and easier to tolerate. I also found doing the treatment before bed and gargling with very warm water after treatment helped with the voice issue since your vocal chords are resting through the night and not being used. Good Luck. It's been very successful for many patients.

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@rits

Aunt Nanny, the nurse sent me a link to a coupon which I printed and brought to Walgreens. It is a Goodrx discount drug coupon for 60 vials. There is info for the pharmacist: member id, rxgroup, rxbin and rxpcn. It says that the coupon"displays a contracted rate based on agreements between your pharmacy… and a pharmacy benefits manager." It has no fees or obligations and is free to use.
I can send you the numbers but I think they might be specific for my prescription. Let me know if you want them. When I refilled the prescription, I did not need another coupon.

Customer questions: 855-426-4465
Pharmacist questions: 855-782-3703
Website: goodrx.com

I can't see why this program wouldn't work for you too.

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Pretty sure the Arikayse comes from a specialty pharmacy and isn't carried by Walgreen's etc.

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@suzyqueue

Pretty sure the Arikayse comes from a specialty pharmacy and isn't carried by Walgreen's etc.

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Reading with interest the comments on Arikayse. I just got approved to begin shortly and I too am very hesitant about the side effects. I should begin treatment in the next week or so. Please keep us updated how you do on the Arikayse. Mine is coming from Kroger Pharmacy. I was surprised about that. I am most worried about the voice side effects. I had damage from radiation already and have trouble with it already. I have done the big 3 for 2 years. It cleared up for a short time but came back rather quickly.

Liked by rits

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