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Rifampin discontinued due to side effects. Looking for feedback.
MAC & Bronchiectasis | Last Active: Nov 19, 2020 | Replies (44)Comment receiving replies
Hi poodledoc! Are you a Veternarian? I have a poodle and we love her so much she’s a toy poodle at 7 pounds —12 yrs old. I love dogs!
I find your discussion very interesting because I’ve been trying to find somebody that’s on Arikayce!! Can I ask you how long you have been on it ? I have been on it going on three months. Mild Sore throat and raspy voice are my symptoms. I have not taken any sputum specimen yet do you suggest that I need one now since I’ve been on it two months or should I wait? My doctor here in Clearwater and my doctor at NJH I have not said to send one but I a have to advocate for myself most of the time and call the doctors. I have clear sputum with pink plugs of sputum in it and I wondered if your Mac Expectorates are manifesting That? I wonder if the Arikayce kills the bacteria and then I cough up The dead MAC. I don’t know if that’s the way it works but it would be interesting since I keep bringing the same stuff up. I would love to hear what you know about taking this med. Thank you so much
Replies to "Hi poodledoc! Are you a Veternarian? I have a poodle and we love her so much..."
Judy, I am a retired small animal Veterinarian, favorite dog breed Standard Poodle, having raised several AKC litters over the years.
I have been on Arikayce for 7 weeks now after getting a positive culture for MAC after taking the big 3 for over 6 months. The only symptom I have is a mild ringing in my ears. Was tested by an Audiologist and I do not have any hearing loss so unless the tinnitus gets worse I will continue taking the Arikayce. I believe IV Amikacin is one of the better drugs for MAC but it has a lot of potentially serious side effects. Taking it by inhalation allows for a smaller dose to get the desired effect with a lot fewer side effects. The "pink plugs" you refer to are probably from small amounts of blood due to the direct irritating effects of the drug, you might ask your Dr about that. My own sputum has been the same for 4 years (light brown), my Dr says the color is probably due to the underlying bronchiectasis that I have. The fact that your sputum is mostly clear is probably a good thing. After the drug kills the MAC it is likely absorbed by the lungs or possibly coughed up but there is no way you can actually see the dead bacteria.
I would be contacting your doctor asap about when to submit a sputum sample, I would think after taking the drug for 3 months it is time to do that. Good luck to you. Bill
My doctor (also in Clearwater, FL) recommended Arikayce, along with Big 3 antibiotics, following recurrence of MAC. I had been off the antibiotics for two years. I decided not to take Arikayce, primarily because of cost factor, very expensive even after insurance coverage. Your symptoms sound tolerable, but I was worried about some of the "common and serious" side effects that I read about.
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@judyhodgern Judy I have been on Arikayce plus Azithromycin and Etambutol since the beginning of June. I had been on and off the Big 3 since 2016, but the MAC continued to spread and the side effects ( for me) of the three meds were beyond unpleasant. As you must know, Arikayce is for people with retractable MAC. Because I am not a coughing kind of gal ( although since Arikayce I am) I will have to have a bronchoscopy in three months. I have recently had to take a short break from Arikayce due to surgery, but I believe this medication along with the two others will kill the MAC because it goes directly into your lungs. Prior to my surgery I was actually starting to have more energy and feel better overall. Arikayce appears to be a drug that MAC does not like, and that’s a good thing! irene5