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.

bailey1 | @bailey1 | Mar 1 10:49am

In reply to @marilynk "I am on Medicare also and about to start arikayce. The nurse called to tell me..." + (show)

@marilynk
My dr made the case that I already have hearing loss from drug treatment and my sibling also did as well, which is why I should use inhaled rather than IV amikacin. It was approved. Also there are genetic tests that look for genetic mutations identifying susceptibility for hearing loss with aminoglycoside drugs (my in drugs and amikacin are a few). Hospital with genetic counseling centers can do this. Hope this helps.

teach34 | @teach34 | Apr 14 8:23am

I am going to be starting Arikayce and I am very nervous. Any suggestions?

irene5 Irene Estes | @irene5 | Apr 15 4:27am

In reply to @teach34 "I am going to be starting Arikayce and I am very nervous. Any suggestions?" + (show)

@teach34 I think it is probably normal to be nervous. My anxiety was because I was afraid I wouldn’t do it correctly. A nurse from Florida had walked me through it on the phone. When I started it I had the voice thing which basically was a 1-800-call me voice. My husband thought it was funny. So throaty! I actually have a daughter with that kind of voice all on her own!! If I remember I was tired, but that was a way of life anyway. I also was anxious about the process of sterilizing everything. The process became second nature, and Arikayce cured my MAC which is what it is intended to do. Wishing you confidence and good health. Irene5

Nonnie | @cpolich | Apr 15 10:18am

In reply to @teach34 "I am going to be starting Arikayce and I am very nervous. Any suggestions?" + (show)

@teach34 I started Arikayce about six weeks ago and was nervous too. So far the only side effects are a productive cough a couple hours following my treatment and a hoarse voice. The hoarseness comes and goes. So far no hemoptysis or bronchospasm. I’m hoping that Arikayce will lead to negative cultures. The data so far is really awesome! I’m currently taking ethambutal and azithromycin as well. I recently stopped rifampin due to side effects. The Mayo Online forum has been really helpful answering questions. Best of luck to you!

bayarea58 | @bayarea58 | Apr 16 2:10pm

I am taking Arikayce, started last summer. I have had a lot of issues with it. I have been on and off multiple times as my doctors try to figure out the best approach. I am currently on it every other day, that seems to be the most I can tolerate, but have another CT in May and we will know more re tolerance then. Unfortunately I developed suspected hypersensitivity pneumonitis to the Arikayce. It took a long time to catch it despite my jumping up and down about the black box warning since my first ER visit two weeks after starting Arikayce. In any event, coughing, throat tightness, hoarseness, you will see from the literature that these are all common. Which of course makes it hard for the patient to discern the difference between normal and not normal. For me, these symptoms were significant and did not abate over time. I saw a presentation by a NJH specialist who said these respiratory symptoms are common with the start of Arikayce but generally improve after 30 days or so. I spoke to my specialist pharmacy that distributes the Arikayce and they said these respiratory symptoms should improve within 60 days and if they don’t it’s time to discuss with doctor, noting it may not be a good fit in that case. With 60 days at daily use (which took months to get to as I started 3x a week, went to 5x, went to 7x, then ER, 3 week break, then back to 3x, building back to 5x, then 7x) but two months at 7x a week, I was not in good shape. I spoke to my doctor and we agreed to take another break. In the meantime, I had a screening CT and that showed opacities likely due to hypersensitivity pneumonitis due to Arikayce. I thought I was going to have to stop altogether, but two NTM specialists said not necessarily, and we went back to the beginning, 3x a week. I seem to tolerate that ok, so after about a month we went to every other day. I have been every other day since February. Now a little throat constriction and a tiny bit coughy, but tolerable. But again, we are repeating the CT soon to see if the opacities are improving or getting worse. With all this you may wonder why I don’t just stop the Arikayce. Well, I sputum converted month one, with cavitary disease, and have stayed negative since. My main cavity has not closed (yet, fingers crossed) so both myself and my medical team would like to keep the drug regimen as robust as possible, with the understanding that at this next CT we may need to make changes. It’s a journey to be sure. I am on the Big 3 plus Arikayce and the Arikayce has presented the most obstacles for me. I do think whether to take on the risks of an aminoglycoside (like Arikayce) has everything to do with your specific circumstances, it’s all a cost v. benefit. I am happy to discuss my Arikayce journey in more detail and answer any questions you have, feel free to private message me if you would like to connect by phone.