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Inhaled Amikacin: What works for me
@cila Cila, I am going to answer your post on a new Thread "Inhaled Amikacin" because Inhaled Amikacin is not that common .. I think people newly diagnosed will be looking for help/information so I will not only try to answer your question with what worked for me in terms of equipment when I was diagnosed .. but also whatever tips I can supply from my File Cabinet. Hope some of it is Helpful! Hugs! Katherine
@cila on Fri, Jun 16
Katherine, do I need to buy the compressor separate from nebulizer? Is it better to get the portable or the hand held. They can't send me the Amikacin until I have the machine. My Dr. did not tell me anything or prefer me for this. Thank you all for your help and I'm glad I have you all to guide me. I really appreciate this forum, you are all God sends. Thanks! Blessing to all! Cila
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From my File Cabinet
AMIKACIN SUPPLIES
1. PARIO VIOS LC PLUS ADULT AIROSOL NEBULIZER COMPRESSOR .. found a good price at:
https://www.exmed.net/p-3907-pari-vios-aerosol-delivery-system-compressor.aspx?defaultvariantid=28616&gclid=comzx6_cwtqcfyidaqodxgqlkg
2. PARI LC PLUS RESUABLE NEBULIZER $69.75
http://justnebulizers.com/pari-lc-reusable-nebulizer-set-buy-5-and-save.html
3. Trek® S Carrying Case Part Number: 047F3000
ttp://nebology.com/pari-trek-s-carrying-case.html?gclid=Cj0KEQjwg47KBRDk7LSu4LTD8eEBEiQAO4O6r5lC7kAloztmLZvEusDoBf_KiSSM9jZTnL0e4mrkiJEaAnGV8P8HAQ
4. Pari Trek S Portable Compressor Nebulizer Aerosol System $65 (if you travel a lot) https://www.healthproductsforyou.com/p-pari-trek-s-portable-compressor-nebulizer-aerosol-system.html?gclid=CJuNttbkwtQCFQgMaQodpA0MmQ
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.
Inhaled Amikacin there was a stress on STERILIZATION!
MY DIRECTIONS: .. 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 your doctor, 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 minutes! By having a week's 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
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Thank you so much Katherine for your help, I'm glad you are feeling better. I will get my Dr. to give me a prescription so I can start buying this. I learned so much from you and help me to keep my chin up for a better tomorrow. Please don't get tired of me by asking questions all the time. Thank you again! Hugs back to you. Cila
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1 Reaction@cila, Cila, you do NOT need a prescription for ANY of the supplies .. ONLY for the Amikacin and the saline! Ask away on any questions .. that is what we are all here for .. just as YOU will be here to help others along the way in the future when Newcomers need help AND YOU are one step ahead of THEM! That is the way it works here on the Forum .. you only need to be just one step ahead to "Play it Forward" and help others! Call your doctor and request the prescriptions! Be SURE to ask your doctor IF they require a "TEST DOSE" be done prior to your going on the prescription!
My notes from my File Cabinet say;
. An INITIAL Test dose of amikacin is done to be certain that there are not difficulties with breathing. I would add that this is routine for inhaled antibiotics, and frankly, most inhaled medications. Don't expect trouble but need to be conservative with respect to safety and that medication is "tolerated" (i.e. no respiratory difficulty - short of breath, etc, ) Cila, also I am sure you are already doing baseline hearing and quarterly tests? .. and getting kidney tests? Follow the guidelines for testing!
Hugs! Katherine
Dear All, in checking my notes for Cila I found the following from 2011 in an email to my doctor at the time .. INTERESTING!! So glad we have Mayo Clinic Connect NOW ..SURE wish I'd had it in 2011. NO .. I NEVER did receive a "packet" of information on Amikacin .. nor did I ever hear of it being put together! That is why I started this thread! I don't think Doctors have a CLUE just how complicated life is when they just hand a prescription like this out! Hugs! Katherine
From my notes in 2011: In the future I would suggest that you and the Doctor put together all the information on the nebulizer, compressor, sterilizing, usage, clinical setting instructions for the required "INITIAL TEST DOSE" etc for future Amikacin patients .. into some type of packet to give out to new patients being prescribed Inhaled Amikacin for the first time. Frankly it has been a long frustrating haul from Dr.'s August 29, 2011 letter, #4 MAC Therapy Plan #3 .. a mere 2 lines of instructions that sounded simple but created a near nightmare of details! Not being familiar with nebulizers or any of this .. I had to untangle a myriad of details .. right down to daily sterilizing of the nebulizers! Who'd a thunk! I would have greatly appreciated a packet of information on inhaled Amikacin rather than 2 lines of instruction!
Thank you Katherine for everything, yes I already check my eyes, and do lab work every 3 months. I have not been to check my hearing, I don't know if I go to ENT or the one that check if you can hear. I already order the compressor and nebulizer on the wedge you gave. I'm just overwhelm on all of this and sometimes its gets on to me but I know better not to feel this way. I have to count my blessings. Thanks again! Hugs back to you. Cila
@cila, Cila, remember .. Knowledge Is Power .. PLUS remember .. I had to learn all this on my own in 2011 .. there was NO CONNECT to help guide me! For you hearing you go to an Audiologist .. An audiologist is a trained professional who measures hearing loss. Good luck and just seek serenity .. in whatever form that means to you .. a good book .. a walk .. a bubble bath .. a talk with a good friend .. YOU know what you need! Hugs to you! Katherine
Two questions for those on inhaled amikacin: Were you instructed to mix the amikacin with the whole ampoule/vial (3 ml) of .9% sodium chloride or just 1 ml of the saline? How long did the hoarseness last ? Thank you.
yes I had no voice at all, I let my doc know , she said to stop inhaling for a few days, suck on strepfen(strepsils & neurofen losenger) and when I started back on it rince my mouth out after using the amakacin. I also inhaled at night so I diddnt have to talk after, just go to bed. Good luck with the Amakacin let us know how you get on.
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1 ReactionCan't remember the saline amikacin concentration but I did lose my voice totally for a couple of weeks. It came back but remained hoarse until I was off it.
I am just using the straight medicine no saline. I started to get hoarse and cough yesterday. Today is the 5th day and I am worse and afraid to use it again. I noticed someone mentioned they only use it every other day. Hope every other day could work for me because I don't want to stop altogether.
Haven't heard of those losenges. Are you in the U.S.? I will ask my Dr.