1. < MAC & Bronchiectasis

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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almap | @almap | Jan 16, 2022
In reply to @dulwich "I ve been on it for 18 months and darkening of skin, including age spots and..." + (show)
@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.

REPLY
almap | @almap | Jan 16, 2022
In reply to @dulwich "I ve been on it for 18 months and darkening of skin, including age spots and..." + (show)
@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

Jump to this post

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

REPLY
dulwich | @dulwich | Jan 17, 2022
In reply to @almap "Has anyone taken Clofazamine for MAC? The ID doctor my mother is going to just prescribed..." + (show)
@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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Thanks for asking- I had several negative cultures after about nine months then relapsed. Now on Arikayce which seems to be working so it is hard to know whether/ how clofazimine contributed to improvement but it is the easiest of the drugs to tolerate

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almap | @almap | Jan 17, 2022
In reply to @almap "Has anyone taken Clofazamine for MAC? The ID doctor my mother is going to just prescribed..." + (show)
@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.

Jump to this post

Thank you, that is really helpful information. I hope my mom will give the Clofazamine a try. She is so weary from the GI side effects that I was worried she would give up. This will encourage her I hope. She is 88 years old but was so active she appeared at least 10 years younger prior to this MAC infection. She was an avid gardener and amazing cook as well so this has changed her life dramatically. I’m glad you are showing improvement!

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1 reply
garry | @garry | Jan 17, 2022
In reply to @almap "Thank you, that is really helpful information. I hope my mom will give the Clofazamine a..." + (show)
@almap

Thank you, that is really helpful information. I hope my mom will give the Clofazamine a try. She is so weary from the GI side effects that I was worried she would give up. This will encourage her I hope. She is 88 years old but was so active she appeared at least 10 years younger prior to this MAC infection. She was an avid gardener and amazing cook as well so this has changed her life dramatically. I’m glad you are showing improvement!

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What about azithromycin.It is the only drug that works for me. I am on 2 every 3rd day. gm

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4 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 17, 2022
In reply to @garry "What about azithromycin.It is the only drug that works for me. I am on 2 every..." + (show)
@garry

What about azithromycin.It is the only drug that works for me. I am on 2 every 3rd day. gm

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Hi, is this the only drug you tolerate? If you have MAC, the reason for multi antibiotic treatment is that you take it so long the bacteria tends to become resistant to a single drug. But most doctors will tell you that if that's the best you can handle, go with it.
How long have you been taking azithromycin? Have your symptoms improved?
Sue

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1 reply
almap | @almap | Jan 18, 2022
In reply to @garry "What about azithromycin.It is the only drug that works for me. I am on 2 every..." + (show)
@garry

What about azithromycin.It is the only drug that works for me. I am on 2 every 3rd day. gm

Jump to this post

I tried to reply to you earlier, not sure what happened. My mom is on azithromycin.250/daily. Also ethambutol 400 mg/2x/day. Amikacin 3x/week . Now he also wants to start Clofazamine. She has no appetite, and her stomach is a mess. She does take probiotics but it doesn’t really help.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 18, 2022
In reply to @almap "I tried to reply to you earlier, not sure what happened. My mom is on azithromycin.250/daily...." + (show)
@almap

I tried to reply to you earlier, not sure what happened. My mom is on azithromycin.250/daily. Also ethambutol 400 mg/2x/day. Amikacin 3x/week . Now he also wants to start Clofazamine. She has no appetite, and her stomach is a mess. She does take probiotics but it doesn’t really help.

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I have a few questions about your Mom's treatment. Adding more meds to the regimen when she is already suffering so many side effects seems extreme.
Is she being treated by an Infectious disease specialist experienced in dealing with MAC specifically in older patients? Are they adding meds because her infection is worse (as shown by sputum culture or CT) or replacing the difficult to tolerate ones?
How does your Mom feel about continuing treatment?
Sue

REPLY
1 reply
garry | @garry | Jan 18, 2022
In reply to @sueinmn "Hi, is this the only drug you tolerate? If you have MAC, the reason for multi..." + (show)
@sueinmn

Hi, is this the only drug you tolerate? If you have MAC, the reason for multi antibiotic treatment is that you take it so long the bacteria tends to become resistant to a single drug. But most doctors will tell you that if that's the best you can handle, go with it.
How long have you been taking azithromycin? Have your symptoms improved?
Sue

Jump to this post

Nothing else seems to work. I was also scared that the mac would get resitance to arithromycin. I use to be on 1 a day and then he went to 500 every third day. I still do the salt morning and night. I have gone a month without anything thinking i will beat this mac shit and then i can feel my spots again. One dr ask my wife if I was nuts and she said yes. My dr is good he lets me do my own thing. Mac does not show up in a chest xray.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 18, 2022
In reply to @garry "Nothing else seems to work. I was also scared that the mac would get resitance to..." + (show)
@garry

Nothing else seems to work. I was also scared that the mac would get resitance to arithromycin. I use to be on 1 a day and then he went to 500 every third day. I still do the salt morning and night. I have gone a month without anything thinking i will beat this mac shit and then i can feel my spots again. One dr ask my wife if I was nuts and she said yes. My dr is good he lets me do my own thing. Mac does not show up in a chest xray.

Jump to this post

So Garry, I'm going to ask a few questions here - I apologize if it's too much, but it might help get you some better answers.
If it doesn't show up on an xray, how did you learn that you have MAC? Did it show up in your sputum culture? And are you seeing a pulmonologist, or is your primary doc treating you for this?

Sue

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