Inhaled Amikacin and Clofazimine
I need help! I was diagnosed with bronchiectasis in Jan 2020 A year later I had developed Mac intracellulare and later, Abscessus. I refused TX because I felt OK & too afraid of the side effects. This past November my CT scan showed a cavity almost 1 cm.
They are now prescribing azithromycin, ethambutol, Inhaled Amikacin and Clofazimine. I am desperately looking for anyone who has done this particular TX !!!
Or, at least anyone who has used the Inhaled Amikacin and/or the clofazimine. I haven’t been able to move forward, and I’m having major anxiety over it, and feel almost paralyzed with fear.
Can anyone help me?
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I am almost 69. I was diagnosed with bronchiectasis, MAC, and asthma in 2013 (I was 57 then). I look really healthy but have suffered with the MAC, alongside bronchiectasis, challenging auto immune issues (inc facial swelling, hideous skin rashes and numerous lung infections) for much of this time. I’ve now lived with this for 13 years but having developed an enlarging cavity in right lung and further MAC progression (‘tree in bud’ formation) in both lungs, my hospital now wants to put me on the regime of amakacin (IV for 4 weeks, then nebulised formula) plus ethambutol, azithromycin, rifampacin and, in later months, clofazimine. I am anxious as I already have reduced hearing in left ear and have been told I might have significant hearing loss as consequence of, particularly, amakacin and ethambutol. Also, red/orange perspiration and tears and orangey skin from (I think!) rifampicin. I am seeking an impossible answer regarding expected life span with treatment vs expected/hoped for life span WITHOUT treatment. ie HOW MUCH more (quality) life might I have after the treatment (and as a consequence of treatment) given my age of 69? If the regime (and all the side effects of treatment) will only give me another 2 years compared to, potentially, living, without treatment, for a further 12 to 18 months, I’m struggling to think it’s worth enduring the regime. Any one in the same situation …… or further along from me…… I’d love to hear your stories.
I went through this treatment the whole process has left me destroyed. Before the IV amakacin-Rifapin-Azithromicin-Clofazimine I had an adverse reaction to Ciprofloxacin which caused “drug induced lupus “
I can only imagine that the Amakacn/Rif/Azithromicin/Clofazimine combination damaged me further. The doctor only told me of the autoimmune reaction after I refused any more treatment at the 6 months mark.
The damage these antibiotics have done continue to progress at 3 years later, Nerve Damage/severe muscle wasting /hearing and vision loss/POTs/ Psychological problems/ Blood circulation issues and shortness of breath.
They also destroyed my gut which destroyed my immune system leaving me with multiple allergies.
Knowing what I know now I would never have started treatment instead I would have done everything I could to boost m own immune system.
For me the antibiotics worked against me. Since stopping treatment 3years ago one of my cavities has significantly reduced .
I was in much better health before treatment. I tend to think it was the Ciprofloxacin that did the damage but there is no way of knowing that following treatment added to more damage.
If you already have autoimmune issues tread carefully
Insist on autoimmune blood work regularly
These doctors have no clue what damage these antibiotics cause