Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@notnancy88
I will be starting with the addition of Clofazimine within the next couple weeks. Current treatment is Arikayce inhaled and Nuzyra. I stopped taking Linezolid due to neuropathy in both feet.
Have you had any additional side effects of Clofazimine? Due to it being a clinical trial, my Infectious Disease Dr instructed me to report any side effects as soon as possible and said that I can withdraw from the drug trial if not tolerating it. I will need an EKG monthly and continued labs.
Best wishes for improved health.
@janetannfaust to my knowledge, the only side effect I have from the clofazamine is a tan and all of the freckles on my face have popped and are more noticeable. I am very fair skinned to begin with. I split my dosing up. I take one clofazamine and one half of the linezolid at Noon and the other half of the dose at night. I am sticking with the linezolid since my PCP calls it a great heavy hitter. I only have a slight bit of neuropathy in the bottom of my right Halux. I can live with that.
On Friday, I will have my yearly Chest CT and a complete audiology checkup. I have worn prescribed VA hearing aids since 2015 - service related disability. The Arikayce makes it worse.
I have labs also. My February EKG did not indicate a heart block. I have never been on Nuzyra.
I feel I am doing better with the longer daylight and warmer weather. I am able to get out and about more.
@notnancy88
It sounds like you are tolerating your antibiotics. I am fair skinned too and had freckles when I was younger. Hoping it isn’t spots of darkness, time will tell.
My diagnosis is Mycobacterium Abscessus and not many options of treatment for mine. Started in August with IVs for 2 months and taking oral drugs and inhaled Arikayce since late October. My February CT scan showed significant improvement but still have the same diagnosis from December bronchoscopy.
I agree with you about more daylight and warmer weather.
Good luck with your upcoming CT scan. 😊
-
Like -
Helpful -
Hug
1 ReactionI hope you are tolerating your treatment. I wanted to suggest, if you aren’t already, about taking a good probiotic/prebiotic daily with your antibiotics.
Take care!
I have bronchiectasis and cavitation NTM, and have been taking azithromycin and ethambutol for a year now, and started taking inhaled Amikacin since January. My doctor wanted me to take clofazamine but I refused-I was uneasy about side effects. So far I’m tolerating my protocol without problems. I may end up taking the clofazamine after all, but really don’t want to.
I was diagnosed with cavitary MAC in March 2024. Had been on Azithromycin, Ethambutol, Rifampin and Arikayce daily for 16 months. In October we dropped the Rifampin and added Clofazimine. No side effects but still no negative cultures.
-
Like -
Helpful -
Hug
1 Reaction