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Starting Arikayce - nervous
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.
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Rits and sandykayhud. I have been 11 days on Arikayce and so far so good. My voice got a little squeaky one day but that’s it so far. I think it’ll be okay!! I use it in the morning, gargle with hot salt water right after and then eat breakfast. I think that helps to clear the throat. I will continue to post as I progress.
Hi everyone. I have been on the Big 3 antibiotics for 3 years. Does anyone know what would happen if you stop the antibiotics all together and eat right and exercise? Do you think it can stay under control?
What are the results of your most recent sputum cultures and CT scans? Do you do any nebs or use a flutter device to keep your lungs clear? Have you talked to your pulmonologist or infectious disease doc? Everyone has a different experience with MAC and bronchiectasis.
In my case, even though the antibiotics (daily) have not eradicated the infection, I persist because the most recent CT shows still-growing pockets of infection and the cultures keep growing the bug. I don't ever want to feel as sick as I was when I started treatment in June 2018. We will be revisiting the issue after my next CT in December, considering cutting back to 3x/wk for 6-9 months if the scan looks better and my cultures are clean.
Other people here will have different stories for you. You will need to base your decision on your health, whether you still have actve MAC, other conditions you have - I recommend you talk with your doc before you make any changes.
Knowing that tri-therapy is efective in less than 50% mainly because of adverse effects, anyone only trying liposomal amykacin
@beatitnow, Hi Amy! I haven't heard from you in awhile. How are you doing? Did you start on the Arikayce? If so, how is that working out for you? Or did you decide to forego meds altogether? I hope you are doing ok!
Were you on Arikayce a year before converting?
Hi, I have been on Rifampin and Azithromycin for 22 months with some nausea and diarrea but tolerable. I start also with Ethambutol but after 8months had to get off due to eye problems. Two months later my Dr put me on Arikayce which I took for 8 months but had to get off because of terrible coughing and light headedness. These symptoms don't happen to everyone on Arikayce, we are all different. I can say they have a wonderful support team and are there for you to call. The person that came to my house to show me the process was wonderful and called me periodically to check on me plus you will get a sponsor who in my case was great. Good luck
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1 ReactionI’ve been on Arikayce (18 months) and the 3 antibiotics for 36 months. You’ll get used to the daily Arikayce. The hoarseness goes away after a few weeks and I had no other side effects. It made me convert after 6 months. For me, it is a wonder drug. If my CT looks good, I’m off all meds in Aug. and will of course continue with daily airway clearance. You’re fortunate to be in Chicago with the best doctors.
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1 ReactionI was advised by someone with a PhD in pharmaceutics and a specialty in drug delivery when taking arikayce to gargle with plain water after treatment, and then I coated my throat in honey (a full teaspoon). This has helped me to not have the terrible sore throat, though I don't know it would work for everyone. My doctor also prescribed two puffs of albuterol 15 minutes before the treatment to open the airways and help prevent coughing. Someone else on the site explained that adding sterile saline to the amikaycin dosage also helps the throat. Gargling to remove the amikaycin from the throat after treatment has been helping me. I'm going on only week 4, though. But the lightheadedness is a serious matter. I'm sorry it didn't work for you, but I think the company could do a better job of informing people ahead of how to keep symptoms at bay. I hope you are doing better soon.
Mokie
I was on for 3 years, got stable and stopped the big 3. 6 months later some symptoms reappeared but after extensive testing, turned out to be aspergillus. Been treated for that for 2 years and counting