1. < MAC & Bronchiectasis

Mac question: Arikayce Inhaler Antibiotic

Posted by jr2366 (Jennifer) @jr2366, Dec 26, 2020

hi all I have a question does anyone know if the medication from arikayce made them sort of feeling little bit more congested and do you think in a few months from being on this inhaler antibiotic pain in the lung will get better in time. i'm only on it for about 9 days now. getting frustrated already I feel like crying I have no voice and not sure if it will come back. I feel like I'm holding back from going to see family sometimes because I can't even speak with hardly no voice. I'm going to call the pharmacist today about those lozenges called strepfen to see if its safe to try them. has anyone found there voice was much better from trying them? I definitely need my voice I'm getting so frustrated thanks to anyone who can help thank you so much.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

janeta | @janeta | May 18, 2021
In reply to @heathert "@janeta I could not communicate for a few weeks but for the rest of the time..." + (show)
@heathert

@janeta I could not communicate for a few weeks but for the rest of the time on Arikayce I could communicate verbally, just a little but raspy. Yes a lot of us will not be able to get rid of this completely, I go to dr next week because my 3 antibiotics do not seem to be doing a lot, so I may be on the same regime as you, will be interesting. What 4 are you on ,Meropenem IV, arikayce, clofazimine and 1 other. yes amikacin is the IV version and arikayce the inhaled. So sorry you have had awful side effects, not nice. Take care Heather

Jump to this post

I'm currently taking IV Meropenem, Arikayce, Moxifloxacin (Avelox), Azithromycin. The Clofazamine may be started next month. I had no idea that I had anything wrong with my lungs until 2018... no idea that I had bronchiectasis or MAC (no cough!, but extreme fatigue that my PCP didn't pick up on for the couple years I mentioned it) .... I believe it could have been found many years prior .... and I wish it had. "It is what it is." *** As an additional note, I initially, in 2018 started with Rif, Eth, and Azithro, but 9 months in, had a "metabolic implosion" (MY words). A sudden severe reaction to the meds - sepsis, acidosis, hemolytic anemia, kidney failure, kidney dialysis, blood clots, atrial fib, internal bleed. 3 weeks in the hospital; 2 wks in ICU and on dialysis; 6 months to recover. I think I still have PTSD from that horrible event. Then, no meds for a year .... now re-started on the second-string of meds. *sigh* **

REPLY
2 replies
heathert | @heathert | May 18, 2021

Wow Janeta that is a big load of meds, I really hope it does alot of good for you. The big 3 was so nasty to you, just horrible, 3 weeks in hospital, scary,thank goodness the dialysis for 6 months helped you, however PTSD is just as awful, I really feel for you. This MAC is such a problem we need new products in the market to help us, there are some in the pipeline, fingers crossed. take care Heather

REPLY
heathert | @heathert | May 18, 2021
In reply to @janeta "I'm currently taking IV Meropenem, Arikayce, Moxifloxacin (Avelox), Azithromycin. The Clofazamine may be started next month...." + (show)
@janeta

I'm currently taking IV Meropenem, Arikayce, Moxifloxacin (Avelox), Azithromycin. The Clofazamine may be started next month. I had no idea that I had anything wrong with my lungs until 2018... no idea that I had bronchiectasis or MAC (no cough!, but extreme fatigue that my PCP didn't pick up on for the couple years I mentioned it) .... I believe it could have been found many years prior .... and I wish it had. "It is what it is." *** As an additional note, I initially, in 2018 started with Rif, Eth, and Azithro, but 9 months in, had a "metabolic implosion" (MY words). A sudden severe reaction to the meds - sepsis, acidosis, hemolytic anemia, kidney failure, kidney dialysis, blood clots, atrial fib, internal bleed. 3 weeks in the hospital; 2 wks in ICU and on dialysis; 6 months to recover. I think I still have PTSD from that horrible event. Then, no meds for a year .... now re-started on the second-string of meds. *sigh* **

Jump to this post

@janeta do you have MAC or MAI thanks Heather

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 18, 2021
In reply to @janeta "I'm currently taking IV Meropenem, Arikayce, Moxifloxacin (Avelox), Azithromycin. The Clofazamine may be started next month...." + (show)
@janeta

I'm currently taking IV Meropenem, Arikayce, Moxifloxacin (Avelox), Azithromycin. The Clofazamine may be started next month. I had no idea that I had anything wrong with my lungs until 2018... no idea that I had bronchiectasis or MAC (no cough!, but extreme fatigue that my PCP didn't pick up on for the couple years I mentioned it) .... I believe it could have been found many years prior .... and I wish it had. "It is what it is." *** As an additional note, I initially, in 2018 started with Rif, Eth, and Azithro, but 9 months in, had a "metabolic implosion" (MY words). A sudden severe reaction to the meds - sepsis, acidosis, hemolytic anemia, kidney failure, kidney dialysis, blood clots, atrial fib, internal bleed. 3 weeks in the hospital; 2 wks in ICU and on dialysis; 6 months to recover. I think I still have PTSD from that horrible event. Then, no meds for a year .... now re-started on the second-string of meds. *sigh* **

Jump to this post

Janeta, it's not uncommon to have PTSD-like feelings after an ICU experience. In fact, there's a name for it - Post intensive care syndrome or PICS. You may be interested in sharing your experiences with PICS in the ICU group here: https://connect.mayoclinic.org/group/intensive-care-icu/

REPLY
1 reply
saaa | @saaa | May 26, 2021

Iniciei com a amicacina semana passada, 3 vezes por semana, dias alternados, segunda-feira, quarta-feira e sexta-feira. intravenoso, diluído em 100ml de soro. Estou feliz por que recebi hoje a quinta dose e não estou sentindo nenhum efeito colateral. Tomo associada a Ethambutol, Rifampicina e Azitromicina diários. Estes três último já tomo a 7 anos com 3 interrupções e 4 recidivas. Queira Deus que desta vez me cure.

REPLY
1 reply
janeta | @janeta | May 27, 2021
In reply to @heathert "@janeta do you have MAC or MAI thanks Heather" + (show)
@heathert

@janeta do you have MAC or MAI thanks Heather

Jump to this post

Interesting that you ask that ... I've seen both written in different parts of my chart. The pulm doc always says MAI; my ID doc says MAC; my last sputum said MAC. I'm sure I saw MAI on an early sputum. I presumed they were essentially the same.

REPLY
2 replies
janeta | @janeta | May 27, 2021
In reply to @saaa "Iniciei com a amicacina semana passada, 3 vezes por semana, dias alternados, segunda-feira, quarta-feira e sexta-feira...." + (show)
@saaa

Iniciei com a amicacina semana passada, 3 vezes por semana, dias alternados, segunda-feira, quarta-feira e sexta-feira. intravenoso, diluído em 100ml de soro. Estou feliz por que recebi hoje a quinta dose e não estou sentindo nenhum efeito colateral. Tomo associada a Ethambutol, Rifampicina e Azitromicina diários. Estes três último já tomo a 7 anos com 3 interrupções e 4 recidivas. Queira Deus que desta vez me cure.

Jump to this post

I hope you understand my English - I believe I understood all of your comment. It appears that you are receiving the usual medications. It's good that you were able to be off the medications for a couple periods of time though not completely. Interesting that you take the Amakaycin 3 times a week ... I take it every day. Yes, we all pray that there's a cure for all of us.

REPLY
janeta | @janeta | May 27, 2021
In reply to @colleenyoung "Janeta, it's not uncommon to have PTSD-like feelings after an ICU experience. In fact, there's a..." + (show)
@colleenyoung

Janeta, it's not uncommon to have PTSD-like feelings after an ICU experience. In fact, there's a name for it - Post intensive care syndrome or PICS. You may be interested in sharing your experiences with PICS in the ICU group here: https://connect.mayoclinic.org/group/intensive-care-icu/

Jump to this post

Thank you, Colleen. I looked through some of the comments ... tragic at the time and tragic for years afterwards. I think one of the main problems with ICU ptsd - from my experience - is the sleep-deprivation. Sleep-deprivation and drugs and their side effects. I cried and begged for something to help me sleep, but to no avail. One doc said I was just "anxious." 🙁 Then, I had visual hallucinations which I could clearly describe to my nurses - it's good it was short-lived, but I still can describe them now most vividly. I didn't progress to 'ICU psychosis' and I am thankful for that. (btw, I worked in healthcare, many years in ICU, so I knew what was happening to me.) Thank you, again, for letting me know about this ICU group, however, I'll concentrate here on my MAC/bronchiectasis/ILD.

REPLY
heathert | @heathert | May 27, 2021
In reply to @janeta "Interesting that you ask that ... I've seen both written in different parts of my chart...." + (show)
@janeta

Interesting that you ask that ... I've seen both written in different parts of my chart. The pulm doc always says MAI; my ID doc says MAC; my last sputum said MAC. I'm sure I saw MAI on an early sputum. I presumed they were essentially the same.

Jump to this post

@janeta MAI comes under the cover of MAC but is a different bug, MAC is gram positive and MAI is gram negitive, It gets very confusing when they call MAI, MAC. Take care Heather

REPLY
extracare808 | @extracare808 | Sep 21, 2021
In reply to @janeta "I think I understand, then, that Arikayce is a brand name of the drug Amikacin. Amakacin..." + (show)
@janeta

I think I understand, then, that Arikayce is a brand name of the drug Amikacin. Amakacin is given IV or injected. The inhaled Arikayce I take now is liposomal - yes, encased in a fat globule. Subjectively, I feel that the Arikayce is the most effective in bringing up - or at least just clearing - the teeny-tiny bit of sputum that I have. SO many drugs and I'm trying to learn! I think I've finally understood that there are multiple ways to treat MAC/MAI, it affects everyone differently, and that just because the Mycobacterium isn't completely gone, I can still have a somewhat fair quality of life ... that it's not a death sentence as I initially thought. THANK YOU for your comments.

Jump to this post

Actually, per my understanding, Arikayce is the brand name for ALIS (Amikacin Liposomal Inhalation Suspension). It's a more diluted better tolerated drug compared to regular Amikacin, which can also be inhaled in addition to given via IV/injection. Prior to a couple of years ago, when ALIS/Arikayce was FDA approved, the only inhalation option was regular Amikacin. Link to 2014 study on inhaled Amikacin: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3972984/

REPLY
View MoreView Less
Please sign in or register to post a reply.