1. < MAC & Bronchiectasis

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.

sounder27 | @sounder27 | Jul 17, 2019
In reply to @windwalker "@rits Hello. I hope they can get your immune system straight. Please keep us posted. Also,..." + (show)
@windwalker

@rits Hello. I hope they can get your immune system straight. Please keep us posted. Also, I like to keep track of what mac patients did or do for a living. Did you have a career? The reason I ask is for my own research. I am seeing a correlation between career choices and mac patients. Another helpful tidbit is whether you have traveled outside of the U.S. previously of your mac diagnosis. Thank you!

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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.

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1 reply
angiejohnson | @angiejohnson | Jul 18, 2019

@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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rits | @rits | Jul 18, 2019

Thank 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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angiejohnson | @angiejohnson | Jul 18, 2019
In reply to @rits "Thank you Angie. I started Tuesday and so far my voice is fine. Do you remember..." + (show)
@rits

Thank 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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It progressed within the first week. Hopefully yours stays fine!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 19, 2019
In reply to @sounder27 "Windwalker. Hello Terri, I called Mayo Pulomonary again today and they were much more accommodating and..." + (show)
@sounder27

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.

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@sounder27, Ah, good! I will keep my fingers crossed that you get an appointment soon! Please keep me posted.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 19, 2019
In reply to @sounder27 "Windwalker. Hello Terri, I have had many jobs throughout my working life. Started out as a..." + (show)
@sounder27

Windwalker. Hello Terri, I have had many jobs throughout my working life. Started out as a sculptress for a toy company, then a jewelry designer, then an aerobics instructor and yoga instructor. After my divorce, I worked as an art teacher for a brief year then for another year as a director of a ymca senior center in a building that had asbestos and black mold. After that I settled into a Home Depot as a decorator and then a kitchen designer. I have been there for 15 years. Environment there is, as you might surmise, extremely dirty and particulate filled... not to mention full of various toxic chemicals. I have traveled to Greece and New Zealand, but mostly travel to west coast and New Mexico. I live in New England. What seems to be the common element that you are finding among MAC and bronchiectasis patients? I would have thought it to be more a gastrointestinal issue that causes the bronchiectasis and that makes us more susceptible to the micobacteria. I find it fascinating that there are so many women who are well educated, independent and who seem not only take care of themselves well, but who also advocate for themselves well. It sure is interesting that it is more common in women over 65. I would be pleased if you could share any commonalities that you find we all share.

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@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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jammer | @jammer | Jul 19, 2019

Thank 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.

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jammer | @jammer | Jul 19, 2019
In reply to @windwalker "@sounder27, Ah, good! I will keep my fingers crossed that you get an appointment soon! Please..." + (show)
@windwalker

@sounder27, Ah, good! I will keep my fingers crossed that you get an appointment soon! Please keep me posted.

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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.

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2 replies
sounder27 | @sounder27 | Jul 19, 2019
In reply to @jammer "I have had MAC for 6 months have been getting treated locally here in FL. am..." + (show)
@jammer

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.

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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

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bibes | @bibes | Jul 19, 2019
In reply to @jammer "I have had MAC for 6 months have been getting treated locally here in FL. am..." + (show)
@jammer

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.

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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.

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