Inhaled Amikacin and Clofazimine

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

@gemini1956
Hi, I am struggling with neuropathy, side effect of drug Linezolid. I am currently waiting for culture result for what antibiotics are resistant now. Currently my treatment is Arikayce inhaled and Nuzyra, ID will be adding possibly Clofazimine if insurance approves it.
I am wondering how your quality of life has been since your treatment ended?
Best wishes.

I am on the big 3 for the third time in 9 years. They made it go away ish twice. But not touching it this time. I did the amakacin inhalation. Seemed to be working but cause some perm hearing loss. So stopped it. Now added clofazimine. Only been on 2 months. Will do a sputum sample next month and see. Some GI issues. But nothing brutal. The advanced BE gives my MAC too many hiding places. So fingers crossed.
But I’m now only 58. And 6’1” and 175lbs. So I have tolerated the meds pretty good so far.

@westcottkm3040
How many months/years were your two previous treatments? Are you currently taking 3 antibiotics?
My diagnosis is Mycobacterial Abscessus.

I was on the 3 first approx 20 months two separate times. Then went off everything for a year as had some adverse drug reactions. Now been almost a year. But net getting very good results this go.
Tried rafubutin this past year. Side effects were terrible. Only on that 2 months. Also tried me on sabuterol in a nebulizer. Only did 4 days. Brutal side effects there as well.
So now on the big 3 and clofazimine. If spit test no better by April will add a 5th drug.
Fatigue is my biggest issue. And any harder cardio like stairs or hills. Can do flat walks no issues.

@janetannfaust I believe the Clofazimine manufacture is in Switzerland. Used in The US as compassionate use. There is no charge

@westcottkm3040
Hoping your treatment improves soon with less side effects. Thanks for sharing your experience.
Take care.

@reneemc you are correct about the clofazamine. I am presently on it for the second time since July 2023. I have had no issues with it except I have more freckles now and have a resort tan. I am very fair skinned so it’s nothing to be concerned about.