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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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That's ridiculous! I thought the $1200 per month Medicare was paying for the vest was outlandish but that's nothing next to this! Be sure to try for the manufacturer's plan. I was told that the income levels are generous and was offered a screening for my copay. Because my copay is $50, I decided to not go through the screening,
Mac and pseudomonas oftentimes will come back. Meds may make the mac go away, but not the reason we get it in the first place. More and more drs are starting to realize that us mac patients need to be on maintenance antibiotics for life.
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1 ReactionWhat kind of maintenance antibiotics are usually used? I asked my CDC doc about it but he didn’t seem to approve. Would rather I call if I start coughing blood.
what is the reason we keep getting it
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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1 Reaction@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!
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
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.
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.
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.