Starting Arikayce - nervous

Posted by rits @rits, Sat, Jul 6 6:21pm

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.

@sounder27

Rits. I am a bit behind you. My doc filled out his paperwork but didn’t get my signature and so is snail mailing it to me and I will bring it back to him. I will be several weeks behind you I think. I understand what you are saying about wanting to begin the medication when you are able to reach your doc easily. I live alone and feel the same way. I will let you know about my qualification for coverage. My part d prescription plan does not cover the Aricayce

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@sounder27, Don't give up trying to get insurance to pay for the Aricayce. You can ask your dr to contact the insurance company and explain that you have a rare disease and absolutely need it. My insurance wouldn't cover my tobramycin, but Mayo made it happen. You can also contact the drug manufacturer and tell them you need financial help with it. Many times, they will help out.

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@windwalker

@sounder27, Don't give up trying to get insurance to pay for the Aricayce. You can ask your dr to contact the insurance company and explain that you have a rare disease and absolutely need it. My insurance wouldn't cover my tobramycin, but Mayo made it happen. You can also contact the drug manufacturer and tell them you need financial help with it. Many times, they will help out.

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Windwalker. Thanks. I will try the manufacturer and I am planning on making an appt with Mayo in Rochester right after my family visits in August.

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@rits

Sounder, I am thrilled to have someone going through this with me. I have Medicare which apparently will cover it. I 'm waiting to hear what my copay will be.

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I am on Medicare also and about to start arikayce. The nurse called to tell me my co-pay would be $2000. a month! That’s after my insurance, Aetna, approved $139,000. for a year. She’s sending papers for me to fill out to see if there are any grants available. In the meantime I’ve been on the big three plus albuterol in nebulizer and vest. I guess we’ll see what happens…

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@suzyqueue

I started on the inhaled Amikacin/Arikayse in Feb. I had some voice changes that corrected themselves within a couple weeks. I did cough a lot during treatment but that subsided too. No coughing up blood or any of the other scary stuff. Doing the Arikayse treatment after nebulizing any Albuterol and Saline is what helped me stop coughing so much because everything was all opened up and easier to tolerate. I also found doing the treatment before bed and gargling with very warm water after treatment helped with the voice issue since your vocal chords are resting through the night and not being used. Good Luck. It's been very successful for many patients.

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Thank you Suzyqueue. This is exactly what I hoped to hear. Good advice! As for using saline prior to the treatment, my doctor told me to space the Arikayce for some time after, at least an hour, just as I need to do with my maintenance inhalant. I cough up a lot of gunk after the saline and she doesn't want me to cough up the Arikayce.

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@suzyqueue

Pretty sure the Arikayse comes from a specialty pharmacy and isn't carried by Walgreen's etc.

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I was told that there are 4 specialty pharmacies in the U.S. that have been contracted by Arikayce to produce the drug and its special nebulizer. The one that is producing it for me is Kroger Specialty Pharmacy. The name led to some confusion because I thought it was a spam call from a supermarket and hung up!

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@marilynk

I am on Medicare also and about to start arikayce. The nurse called to tell me my co-pay would be $2000. a month! That’s after my insurance, Aetna, approved $139,000. for a year. She’s sending papers for me to fill out to see if there are any grants available. In the meantime I’ve been on the big three plus albuterol in nebulizer and vest. I guess we’ll see what happens…

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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,

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@sandykayhud

Reading with interest the comments on Arikayse. I just got approved to begin shortly and I too am very hesitant about the side effects. I should begin treatment in the next week or so. Please keep us updated how you do on the Arikayse. Mine is coming from Kroger Pharmacy. I was surprised about that. I am most worried about the voice side effects. I had damage from radiation already and have trouble with it already. I have done the big 3 for 2 years. It cleared up for a short time but came back rather quickly.

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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.

Liked by Brenda R.

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What 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.

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@windwalker

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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what is the reason we keep getting it

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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.

Liked by Brenda R.

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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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