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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dulwich | @dulwich | Feb 27, 2021

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!

bnthorson | @bnthorson | Feb 27, 2021

In reply to @dulwich "Hi I’ve been on the same combo since the summer. No problems with clofazimine- just be..." + (show)

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.

bnthorson | @bnthorson | Mar 5, 2021

In reply to @dulwich "Hi I’ve been on the same combo since the summer. No problems with clofazimine- just be..." + (show)

Thank you

garry | @garry | Mar 6, 2021

In reply to @dulwich "Hi I’ve been on the same combo since the summer. No problems with clofazimine- just be..." + (show)

What is QTc prolongation

Colleen Young, Connect Director | @colleenyoung | Mar 6, 2021

In reply to @garry "What is QTc prolongation" + (show)

@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.

garry | @garry | Mar 7, 2021

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

Jen_b | @jenblalock | Apr 16, 2021

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

bnthorson | @bnthorson | Apr 17, 2021

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.

almap | @almap | Jan 15, 2022

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.

dulwich | @dulwich | Jan 15, 2022

In reply to @almap "Has anyone taken Clofazamine for MAC? The ID doctor my mother is going to just prescribed..." + (show)

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