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.

My doctor gave me a titers test of my antibodies (immunity) and found that, despite having both pneumonia shots, I do not have many antibodies that I should have. She gave me another pneumonia shot and told me that we would repeat the test for antibodies in six weeks at my next appointment. If I am still low in antibodies she said we would do an infusion.

I don't know if the lack of natural antibodies is why I have so many different bacteria but I'm glad my doctor is looking into it. Then of course, there"s bronchiectasis which creates an ideal environment for these nasty beasties to flourish.

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@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

@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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Hi Terri. I am 76 and was a teacher – a career open to women back then. At age 40, I went to law school and practiced law until I retired due to health issues.

While I traveled outside of the U.S. when I was younger, the last foreign country trip I can remember was in the 1990's.

Rita

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@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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Hi Terri, I worked in the school system for 25 years. I also traveled extensively in Europe and in every State. I became intensely sick in 3 3rd world countries. Also had H-pylori. at age 62 ws DX COPD. Hdn't smoked in 40 Yrs. I came down with my first pneumonia after sight seeing in Washington DC.

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@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 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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@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. I called Mayo Rochester yesterday to make an appointment and they said all appointments were taken. Is this a usual response? I am able to make an appt a full year ahead with my doctors I was taken aback that they could not accommodate me.

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@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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@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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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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@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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@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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@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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