NEED HELP - Inhaled Amikacin - Mycobacterium

[thebiglug]

I recently was hospitalized with Mycobacterium Chenolae group. My PFT's went from mid 80's to 48 in less than 3 months. First treatment was IV Amikacin and Cefoxitin. After a few weeks on the Cefoxitin I developed flu like smptoms and temperature. I was hospitalized again and had a sever reaction once they started the Cefoxitin. I am now on oral antibiotics of Clarythmycin and Zyvox. Dr wants me to consider inhaled Amikacin but I would have to go to hospital 3x a week to nebulize there. He stated it was available at pharamacies.

Does anyone nebulize Amikacin currently? If so is it available through the pharmacy and which pharmacy? Also, I understand that some of you have had as well. What treatments did you take, the results and time period.

I appreciate any information that you can provide.

 

[theLostMiler]

Im on an ipad but next time im on a comp i can send you my experience... Also search myco on here and youll find lots of good topics to browse.

Also i think amikacin is in shortage? I never had to do it at the hospital, i did it at home and more than 3 x a week, you do it like tobi.

Anyways, i imagine a bunch of people will be responding.

Like i saud, ill be back

 

[Mallymookcf]

i too have had a horrible experience with cefoxitin while i was being treated for the micobacterium abcessus. i did great on it for the first few weeks then my ody i guess just had enough bc i experience bad allergic reaction. during that time, i too was treated with inhaled amikacin. i was able to do it at home. i had to draw it up with a syringe from a little bottle, and just did it in my regular nebulizer. it was when i was in highschool, 10 years ago so i can not recall where i ordered it from..i just remember it came to me in the mail. so i know it is possible to do at home, i just dont know who you need to go through. i remember it made me severely horse...or shall i say mute!!! i couldnt talk at all. but i believe it was worth it all the therapy because i have not grown the micobacterium since. Good Luck to you and God Bless

 

[theLostMiler]

Hi David,

So here is a quick recap of my antibiotic experience... it can be hard to read but I try to keep it chronological.

I started out culturing m. chelonae in Dec 2006, I started a year long oral and inhaled antibiotic regimen.

I did an IV boost initially, but then settled out with I think it was zithromax, bactrim and inhaled TOBI... in around July/August (now 2007) I became resistant to all those so I was switched to biaxin, zyvox and inhaled Amikacin.

I develped peripheral neuropathy in Dec of 2007 b/c of zyvox ... took till February 2008 to get over... really watch for any numbing, pain in your feet and calves when you are on this medicine. I have since taken it again but with Vitamin B6, my doctors says it supposed to help make sure the neuropathy doesnt develope.

In February (now 2008) i was feeling terrible, i was put on Timinten and Tobi, both IV... and at the time I was switching to adult cf doc and kinda got lost in the mix between ped and cf doc...so I wasnt really monitored for 3 months, but was continually feeling worse even with 4 treatments a day and those IV abx.

I went into the hospital in May of 2008, got an Infectious Disease doctor in on my case (highly recommend getting one on your team b/c of the NTM), found out I had been upgraded to m. abscessus from m. chelonae and the ivs I was on for 3 months, were doing nothing.... no wonder I felt like poop!

At this point, i did cefoxitin and amkacin, both iv for 2 months prescribed by my new Infectious Disease (ID) doctor. I was also on an appetite stimulant at the time b/c the NTM really really diminished my appetite. This treatment plan was from May to July of 2008 and I FELT GREAT!!!

I actually got rid of any NTM in my culture for about 6 months after this aggresive round of treatment.


Once 2009 came about, i ended up starting having m. abscessus in my cultures again, along with b. cepacia... I would say that the b. cepacia for me has probably caused more lung damage than the m. abscessus... but i cant be certain, or maybe a faster decline.

I have done maintenance treatments for the m. abscessus with cefoxitin and inhaled and iv amkacin (both forms). I have also been treated with tigacycline, as well as oral biaxin and zyvox again. I started having noticable hearing loss and was becoming resistant to everything but amikacin, so i havent used it in about a year...

i have just heard from others with NTM, that amikacin I believe is in shortage right now.

My last treatment was for 3 months for the m. abscessus. Once I cultured the b. cepacia as well, that has increased my overall iv treatment times, so often I have done months for the b. cepacia then done another month or few for the m. abscessus... I would say I always have a month to three though for treatment everytime.

the m. abscessus affects me by giving me fevers and generally feeling poopy. I have atypical cysts in my lungs from the m. abscessus. but like i said, my doctors and I have a hard time deciphering if its the b. cep or the psuedo or the m. abscessus most the time.

in 2006 I think my FEV1 was around high 50's? and at the Fall of 2010 I am about FEV1 of 33-41%.

Where are you located if you dont mind me asking?

My doctors have consulted with Denver national Jewish (a tuberculosis speciality center for both real TB and non TB)

I am currently looking into getting listed for transplant, mainly b/c I am developing more resistances and my declining pfts, though a lot slower than yours. Plus it can be harder to find a center that takes a patient with "more difficult" bugs.

As far as where I used to amikacin from Foundation Care (where the eflow/altera/TRIO comes from).


whew, sorry I know that was really choppy, but hopefully its still readable...

If you have any more specific questions or need me to elaborate on anything, seriously, just ask. I try to ask my doctors why they do the things they do, so I can also try to give you some explanation for some of the things that I have done.

Lastly, I am sorry to read that you have had such a rapid decline with the NTM (Non-TB Mycobacterium). I am hoping its not permanent, but just a matter of getting it under control.

Oh I thought of something else, when was your last CT scan?

 

[thebiglug]

Thank you for the detailed information. I live in Phoenix. I have a great Infectious Disease doctor and CF team. I researched the Denver hospital as well and thinking about contacting them after my next round of tests. My PFT's increased from 48 to 61 the last 2 months but not close to my baseline in the mid 80's. The last CT scan showed that the two modules were decreasing (one was almost gone). The crazy part is my sputum comes and goes with culturing Myco and the Bronch samples from the actual nodules didn't culture anything. I had underlying Aspergillus cultured and taking Sprononox to treat and it didn't show in my last culture (they think the nodules could have been Aspergillus but really have no idea). I have a PFT and CT Scan scheduled for this Monday and a follow up with ID doctor thereafter. This is were the "If's" come in. If I don't show an decrease in nodules and incline in PFT's what is the next step. I wish I could take the Cefoxitin and even inquired if I could do a slow drip in ICU. The doctor said it would kill me (by the way I like doctors that tell the truth and no sugar coating). That is why I am inquiring about the Inhaled Amikacin and the IV Tigecycline. The Infectious Disease doctor said these would both be options. Depending on the results from Monday I might contact Denver as well and even fly over to get a second opinion. I also contacted the Professor who wrote the Shower Head/Mycobacterium article to see about testing my home environment since the ID doctor said if we don't correct the root cause of contamination even if I get rid of it I will get it again.

Thank you again for the information if anyone else has similiar information I would be greatful.

Take care and wishing all good health.

 

[RitaLSonnenberg]

I dont know if you have tried Cayston yet. I nebulize Cayston every other month, alternating with the TOBI. I have found it helpful. My PFTs suck and baseline is around mid 50s now. I would try anything to get my PFTs up to the 60s again... that would be awesome... Cant remember last time i ever saw 80s.(probably in the 1980s) .. let alone 70s... oh well.... Good luck!!!

 

[Jane]

Originally posted by: thebiglug
I also contacted the Professor who wrote the Shower Head/Mycobacterium article to see about testing my home environment since the ID doctor said if we don't correct the root cause of contamination even if I get rid of it I will get it again.
.


I am curious about the testing and PMed you some info.

My boys did amikacin nebs for about a year before they identified their bugs. We did it at home and mixed our own for each dose.

This is the link to the article about our bugs.
<a target=_blank class=ftalternatingbarlinklarge href="http://jcm.asm.org/cgi/content/full/45/10/3449">http://jcm.asm.org/cgi/content/full/45/10/3449</a>

 

[windex125]

Thelostmiler... great journal of meds and reactions. You are excellent in the care of yourself but we have to be. We have to work at CF every single day. I used to keep a journal as well yrs ago,but I gave up and now just go with the flow, of knowing my body and what I have to do to keep well. I culture MAC as well but I've never seen anyone post this specific one before it's called Mycobactrica Avium. We did a round of very strong drugs when it first cultured back in 99 It was a cocktail of 3 oral meds for 6mts I think? I turned me a suntan color of light orange. Since then we have used the usualy IV meds when I get pnemonia, which I get practically every year. I have not seen a infec. disease doctor specifically for the MAC my right lung does not even show up on xray anymore it is completeled diseased, my pfts are in their mid 40's and have been that way for at years now.I also have loss of hearing due to inhaling Tobi in the early 90's also remember taking it out of a small bottle with a syringe and putting it in my nebulizer,to inhale not knowing first bad side effect was loss of hearing. I got fitted for hearing aids abt 7yrs ago. I realize that maybe I have not pushed the MAC issue and maybe I shd have. But I suggest anyone who is having it now do not neglect it, it will spread. I turned 56 this month, why I am still around have no idea? Luck? Grace of God? I made the trip to NC to look into transpant abt 2003 but then after much thought. I thought the lungs shd go to a younger person. Also I did not understand the whole wait for your pfts are in their 20's before you can be considerered. Back to the MAC for a second I think once we culture this bug it will always be there hiding in the back round breading. My port was put in 9yrs ago. and bless the doctor for suggesting that. I admire the knowlegable young people on this site. I am so very impressed with you all. I love reading yr. posts. I just started posting this year, but read previously.Our life is like a roller coaster ride for sure.I've never felt as though my CF was in control of me even in the worse of times, and there have been many. I hope I do not sound like nut case I just felt like sharing my thoughts tonight overall.Pat-56/CF

 

[thebiglug]

Thanks for posting Pat. You inspire us all. Live life to the fullest.

 

[beleache]

Hi David,

I was dxd w/ Mycobacterium abcessus.. At first wasn't treated till a cavity showed up. I live in NY area but besides my NY center I go to Denver National Jewish for their expertise.

I was initially put on Cefoxitin IV (7mos) Clarithromycin (oral) & Inhaled Amikacin. I have continued the Clarithromycin & Amikacin for about 2 yrs now.. I use a Devilbiss nebulizer for the Amikasin (DNJ Drs. insisted on it) Inhale it once a day .. Between these to meds I am staying stable , TY God.

Last time I went to DNJ the dr. said she would like me on Cefoxitin or another iv med i forget the name for , at least once a yr maybe twice. So we will see what happens soon im sure lol..

If you have any questions please dont hesitate to PM me..

Take care <img src="i/expressions/heart.gif" border="0"> joni

 

[megan420]

PLEASE! Be cautious when using Amikacin! I too had a micro bacteria in 2003 and had to take cefoxitin and amikacin in IV form. The amikacin took my hearing. I am not deaf but Im considered hard of hearing. We were not told that this was a side affect untill my loved ones started noticing me asking them to repeate everything they said. We asked the docs about it and they said it was a side affect! I regrete taking that medicing every day of my life, since. I have to wear hearing aides and i hate it! Please ask your doc about this before you take it!