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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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Windwalker. Hello Terri, I called Mayo Pulomonary again today and they were much more accommodating and told me to call every day at 9 my time to check for any cancelations. I felt much more positive about getting an eventual appointment. Just wanted to share.
@rits I have been on Arikayce since January. My only issue has been loss of voice. I am at NJH right now and Dr Huitt is having me take 2 albuterol puffs, then Aerobika, then Arikayce first thing in the morning.
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2 ReactionsThank you Angie. I started Tuesday and so far my voice is fine. Do you remember how long it was before you noticed any problem with your voice?
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1 ReactionIt progressed within the first week. Hopefully yours stays fine!
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2 Reactions@sounder27, Ah, good! I will keep my fingers crossed that you get an appointment soon! Please keep me posted.
@sounder27, chatty2, and @rits Hi girls. I am collecting data to hopefully submit it for studies in the future. I do not think anyone, anywhere; is gathering what I have. My findings so far, are that a great majority of mac infected women worked in the medical field (many were nurses). Second to medical, is the teaching field. Lots and lots of teachers are mac infected. What the two have in common are that both of those career fields expose you to a lot of people and a lot of germs. The other thing that comes to mind is that most women of menopause age get this, and you hear of very few men getting it. Is this disease driven by the lack of testosterone? Before menopause, we all had some testosterone in us. Maybe that is the protective link?? I collect data on localities to see if more places are becoming 'hotbeds' for mac. I ask about travel to see if there is any correlation there. Thank you for contributing that info I hope it helps us some day.
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1 ReactionThank you for the information. The only field I fit into is female gone through menopause, got mine at age 69 and have had MAC for 6 months now. I live in Florida.
I have had MAC for 6 months have been getting treated locally here in FL. am going to Mayo, Jacksonville next month. Hoping they can do more than locally. I am so tired all the time and no energy at all. Does anyone else have these problems.
Jammer. Tired??? That’s an understatement. The exhaustion I feel is all encompassing. If I sit down for more than 5 minutes, I fall asleep in the chair. It has become difficult to go to work and I have had to reduce my hours to part time. I’ve become a real party pooper!!! Lol
Hi I am 85 years old and was diagnosed five years ago when I had pneumonia. But Mac was
suspected isix years before that but couldn’t get a good test. Six months ago they found I had nodules in my lungs. My only symptoms are tiredness tiredness tiredness. Not every day. And I still walk 2 miles a day. There is no way I would be treated with those three anabiotic’s. For the ladies that’s doing research I lived in Indonesia in the 60s. Maybe that’s where I got it. Anyway that’s my story. Having a second CAT scan in another three weeks. Hope you all are getting better and better.