← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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@katemn

Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I’ll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn “abscesses” mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

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Replies to "Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let..."

Hi Katherine,
I believe it is the inhaled one. In my notes from Dr A. he mentioned
pending clinical response from what they are doing May 15th, there’s a
possible enrollment into the liposomal amikacin versus off label amikacin
with or without clofazimine which has rifampin which I was on a full year
and did no good and switched to rifabutin for 10 months which was stronger
and no results yet. Please tell me everything you can about this
amikacin. I believe I was told it was inhaled. I really appreciate the
links you sent me, I haven’t read it yet but plan on doing that today. I
don’t know how to find this type of information and you can find it! It
seems I am absent minded a lot anymore!

Have you heard of the Leprosy drug or shot? They considered that but that
too turns your skin very dark! And it isn’t approved by the FDA. They
said it was safe. I just don’t like the name of it, fear of looking like
a leper! They assured me that wouldn’t happen!

You mentioned the hearing problem and this morning my ears are so plugged
up! For 3 hours! They have never been plugged up before, don’t know why.
I have been off ethambutol and the other meds for 4 weeks now so I
shouldn’t experience any ear trouble. Yours was mostly loss of hearing?
Today I am getting a sonogram on my carotid artery that was operated on
about 7 years ago. Hope that isn’t plugged again. I won’t do that
operation again!

My skin is turning back to normal and I won’t have t hat nice suntan look!
Darn. I figured it is the rifabutin but they want to check to see if any
other damage has been done.

Thanks again for sharing

I haven’t started the meds yet. My infectious disease dr said 1 of the
drugs I will be taking, is administered through a pic line. Has anyone
taken a drug this way for their mycobacterium abscessus? I haven’t heard
anyone mention taking their meds this way??
Hope one of you can answer my question.
Thanks, Tutti

THIS IS A LONG POST SO MEANT ONLY FOR e3451 .. rest of you can ignore it!

Hello e345l, when I was on inhaled Amikacin there was a stress on STERILIZATION! Really keeping things clean! Now since I stopped with the inhaled Amikacin 5/14 perhaps there is a new machine but

THESE WERE MY INSTRUCTIONS .. THEY MAY HAVE CHANGED SINCE 2011!!
1. If you wish to use Mayo Pharmacy, you will need to call the pharmacy to set up a mail order account. The phone number is 1-800-445-6326, and press “0” to speak with a live person. They will ask you for your mailing address as well as your credit card information and prescription insurance information, if not already on file. If you travel, just let them know to which address you wish to have your prescriptions sent.

2. Once you have an official amikacin prescription from Dr. Aksamit, contact the pharmacy and ask them to mail the Amikacin out to you. The first prescription will be for one vial, for your test dose. Once you receive the medication, please call your physician to arrange for the administration of your test dose. If your doctor is unfamiliar with this procedure, then s/he will need to contact Dr. Aksamit.

3. In addition to the amikacin, you will also need normal saline (which will be included) for diluting the amikacin prior to inhalation. Your doctor will also need to supply you with, or write a prescription for, a nebulizer (machine for administering inhaled medication).
USING
1.Use a clean syringe each time you enter an amikacin vial. Reorder the syringes each month when you refill the amikacin.

2. Needles/syringes should be disposed of by placing them in a “sharps container”. Syringes should be dropped into the container needle end first, and we do not recommend recapping the needle. While sharps containers can be purchased, you can also make your own by re-using an empty hard plastic bottle, such as one used for liquid laundry detergent, shampoo, wet wipes, coffee, etc. The container should be labeled, “Do Not Recycle: Household Sharps”, and may be placed with the cover on in the trash, though you may wish to check to see whether there are any sharps collection sites in your area (which are considered safer than placing sharps in your trash).

DAILY SCHEDULE
1.In 4-Cup Plastic Measuring Cup http://smile.amazon.com/Norpro-4-Cup-Plastic-Measuring-Cup/dp/B000HJBFFS/ref=sr_1_1?ie=UTF8&qid=1462336680&sr=8-1&keywords=plastic+4+cup+measuring+cup Took apart and washed the nebulizer parts in antibacterial dish soap in HOT water .. rinsed carefully in HOT water. Let sit overnight in to dry in measuring cup. In morning transferred clean parts into a “baby bottle sterilizer”. From the millions of things I had researched .. I had read about this trick .. a whole lot easier than trying to boil the parts for thirty months! By having a weeks supply of the nebulizer and this sterilizer .. I was able to make a frankly unpleasant task a little less unpleasant AND keep myself safe. Maybe someone else can come up with something better/easier but this is the best I could come up with. Mine was: The First Years Power of Steam Electric Steam Sterilizer from: http://smile.amazon.com/First-Years-Power-Electric-Sterilizer/dp/B002WN2B6O?ie=UTF8&keywords=baby%20bottle%20sterilizer&qid=1462337037&ref_=sr_1_12_s_it&s=baby-products&sr=1-12

TIP: REQUEST 90 DAY PRESCRIPTIONS FOR ALL YOUR ANTIBIOTICS .. THEN YOU HAVE JUST ONE CO PAY.

TIP The only other tip was we travel a lot so I purchase a 2nd Pari that was smaller but took longer. I would envy you if a newer unit has come out that would take a shorter time. Personally it always took me close to a half hour to get the Amikacin in my lungs .. no matter how deeply I tried to breathe .. AND if I tried not to pay too much attention to a TV program that I was trying to distract myself with! BUT I got healthy so DO IT! In the end all this is worth it .. GO FOR IT! Good luck .. hope some of this has helped.

TIP PRIOR TO BEGINNING my daily probiotics I got oral thrush. This was the recommendation: As far as the thrush goes.. generally approach is a trial and error sequence. First, nystatin swish and spit; then fluconazole, then clotrimazole 10 mg lozenges – taken up to every five hours. Other is a ‘magic mouthwash’ which has nystatin in it as well as Benadryl, hydrocortisone, and doxycycline. Recommend trial of clotrimazole next. If no improvement would try the mouth wash.

TIP MY UNIT: PARI VIOS LC Sprint, Deluxe I found the best price at Just Nebulizer $55.95 .. just checked .. still the best price I could find. Ask the doctor .. this is the one I used. http://justnebulizers.com/pari-vios-nebulizer.html?gclid=Cj0KEQjwmKG5BRDv4YaE5t6oqf0BEiQAwqDNfBm39YY5GKewgU0u12sOyKrzsuPl1iFF6-faEvvUjxkaAmQd8P8HAQ

TIP I then purchased Reusable Nebulizer Part No 023F35 : I PURCHASED SO WILL HAVE 7 NEBULIZERS-ONLY HAVE TO STERILIZE ONCE A WEEK! $14.95 ea but I was willing to do 7 for the convenience at a stressful time in life .. plus I wrote it off as a medical tax deduction. http://justnebulizers.com/pari-lc-sprint-reusable-nebulizer-set.html?gclid=CLr_vtvLv8wCFQwxaQodgMwGBg

Thanks Katherine, this is a lot of helpful information! I do have a
nebulizer, I took something a while back but I don’t do that any more per
doctors orders, but have the machine. It helps to understand it all.
Something I took in a nebulizer made me sick to my stomach so I got another
medication for it.
My understanding was there is a test trial where one goes to Mayo about
every month so the doctor can keep tabs on you more closely. And you had
to do it faithfully at home every day.
Two lung doctors told me about the leprosy drug, it is for real for
treating MAC. Will wait to see Dr. Akasmit and what he recommends! But at
least I will be knowlegable about Amikacin.

Ellen

Hello Katherine! I hope you got my email with my name. My daughter set me
up and thought we had to be careful with our name. Now I don’t know the
link to get on the Mayo news letter or whatever I was on and saw yours and
others post. Can you give that to me? I will be going to Mayo on the
15-16th. Hope I can see Dr A as I have some issues since I am not on any
meds right now.

Ellen

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