Clofazimine for MAC: Anyone have experience with this drug?

Posted by bnthorson @bnthorson, Feb 27, 2021

I am going to be starting Clofazimine along with the big three as one strain of MAC I have is resistant to Azithromyacin. I am as wondering if anyone has had experience with this drug?

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Hi
I’ve been on the same combo since the summer. No problems with clofazimine- just be sure to cover up from the sun as it will darken your skin all the more if you don’t .( sunscreen, hat , long sleeves, gloves-it darkens age spots). Also with being on azithromycin too, you should get an EKG after a month or so to make sure no QTc prolongation.
Good luck with the treatment!

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@dulwich

Hi
I’ve been on the same combo since the summer. No problems with clofazimine- just be sure to cover up from the sun as it will darken your skin all the more if you don’t .( sunscreen, hat , long sleeves, gloves-it darkens age spots). Also with being on azithromycin too, you should get an EKG after a month or so to make sure no QTc prolongation.
Good luck with the treatment!

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Thank you. I had bad reaction to Arikayce so I have been worried about this, even though the side effects are different. I have been getting monthly EKG and blood work since October.

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@dulwich

Hi
I’ve been on the same combo since the summer. No problems with clofazimine- just be sure to cover up from the sun as it will darken your skin all the more if you don’t .( sunscreen, hat , long sleeves, gloves-it darkens age spots). Also with being on azithromycin too, you should get an EKG after a month or so to make sure no QTc prolongation.
Good luck with the treatment!

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Thank you

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@dulwich

Hi
I’ve been on the same combo since the summer. No problems with clofazimine- just be sure to cover up from the sun as it will darken your skin all the more if you don’t .( sunscreen, hat , long sleeves, gloves-it darkens age spots). Also with being on azithromycin too, you should get an EKG after a month or so to make sure no QTc prolongation.
Good luck with the treatment!

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What is QTc prolongation

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@garry

What is QTc prolongation

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@garry, the QT interval is a measurement made on an electrocardiogram used to assess some of the electrical properties of the heart. QT prolongation happens when the heart muscle takes longer than normal to recharge between beats. It is an electrical disturbance which can be seen on an electrocardiogram (ECG). Excessive QT prolongation can trigger tachycardia – a heart rate over 100 beats per minute.

@dulwich may be able to explain more and his experience with QTc prolongation and azithromycin.

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They said I had extra beats. Not to worry lots of people have that they said.Thanks for the info.

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I was on Clofezamine for over a year back in 2016-17. No issues except dry eyes and a nice tan.

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Thank you for responding. I have been on the clofazamine now for about 6 weeks. I am pleased that the side effects are relatively benign. Mostly for me it is digestive issues. Working hard to gain some weight. Hoping this will get rid of the resistant strain of MAC.

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Has anyone taken Clofazamine for MAC? The ID doctor my mother is going to just prescribed it because she couldn’t tolerate the Rifambin. The side effects look awful. Just wondering if anyone has had good results with it. Thank you for any feedback.

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@almap

Has anyone taken Clofazamine for MAC? The ID doctor my mother is going to just prescribed it because she couldn’t tolerate the Rifambin. The side effects look awful. Just wondering if anyone has had good results with it. Thank you for any feedback.

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I ve been on it for 18 months and darkening of skin, including age spots and skin driness are the main side effects. People think I have been on vacation lols. You will need lots of sun protection and moisturizer
The Gastrointestinal side effects listed seem to be a non issue for most people
In practice the side effects are very benign relative to other MAC drugs and MUCH easier to take than rifampin
In terms of results it is unclear how well it works -studies are ongoing

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@dulwich

I ve been on it for 18 months and darkening of skin, including age spots and skin driness are the main side effects. People think I have been on vacation lols. You will need lots of sun protection and moisturizer
The Gastrointestinal side effects listed seem to be a non issue for most people
In practice the side effects are very benign relative to other MAC drugs and MUCH easier to take than rifampin
In terms of results it is unclear how well it works -studies are ongoing

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Thank you, I’m glad to hear the GI issues are not the main problem since the other antibiotics she is on are really hard on her. I hope and pray for these meds to work for all suffering with this awful MAC infection.

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@dulwich

I ve been on it for 18 months and darkening of skin, including age spots and skin driness are the main side effects. People think I have been on vacation lols. You will need lots of sun protection and moisturizer
The Gastrointestinal side effects listed seem to be a non issue for most people
In practice the side effects are very benign relative to other MAC drugs and MUCH easier to take than rifampin
In terms of results it is unclear how well it works -studies are ongoing

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I forgot to ask if you’ve noticed improvement in the18 months?

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