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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@colleenyoung

Hi @angeles31, I moved your question about Clofazamine to this discussion on the same topic:
- Clofazimine for MAC: Anyone have experience with this drug?: https://connect.mayoclinic.org/discussion/clofazimine/

I did this so you can read previous helpful posts and connect easily with members like @marthamac @bnthorson @dulwich @jenblalock @hydrang3a @nac1 @marlin and @sueinmn

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Thank you 😊

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@angeles31

I’m glad to hear you had no issues
No change in skin color ? How long did you take it and what other antibiotics did you also take ?
I am 90 years old . Running out of time . Thanks for your response .
It’s very hrlpful .

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I took the Clofazimine for 15 months. I did have major darkening of the skin and the dr reduced my dose from
100 mg to 50 mg. Then I just looked like I had a great tan. It has taken almost a year for it to fade after stopping the drug. Other than that Clofazimine was fine. Hoping for good results for you!

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Did you take any additional antibiotics with Clofazamine?
Thank you

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@colleenyoung

Hi @marlin and @heathert, I moved your question about clofazimine to this discussion:
- Clofazimine for MAC: Anyone have experience with this drug? https://connect.mayoclinic.org/discussion/clofazimine/

I did this so you can connect with @bnthorson @dulwich @jenblalock @almap @sueinmn @nac1 who also have experience with this drug and may be able to share their experiences with having a negative culture after taking it and if they had skin discoloration after being on it for several months.

Marlin, have you started taking clofazimine? Are you taking other antibiotics too?

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I have not yet started clofazimine, but am about to. Will take it with Rifampin.
I had hearing loss on azithromycin, so the doctor is recommending clofazimine. I wonder what will happen with clofazimine.

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@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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I experienced hearing loss from Azithromycin after taking it 3 months. My EMT doctor said it’s irreversible.
Very discouraging.

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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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Clofazimine is very tolerable. Just make sure to take a very good probiotic a minimum of 4 hrs apart from the meds. The skin discoloration is more like a light bronzing/sunburn. It will fade gradually over months once the medication is stopped. Clofazimine is used in combination with other drugs and is effective. It facilitates the other meds getting into the bacteria and working there. This is not a medicine you should be afraid of.

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@formergardener

Clofazimine is very tolerable. Just make sure to take a very good probiotic a minimum of 4 hrs apart from the meds. The skin discoloration is more like a light bronzing/sunburn. It will fade gradually over months once the medication is stopped. Clofazimine is used in combination with other drugs and is effective. It facilitates the other meds getting into the bacteria and working there. This is not a medicine you should be afraid of.

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I appreciate your comments very much. They are reassuring and the recommendation about probiotics is vert helpful. By probiotics are you referring to yogurt or kefir ?
Or to capsules of some kind ?

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@angeles31

I appreciate your comments very much. They are reassuring and the recommendation about probiotics is vert helpful. By probiotics are you referring to yogurt or kefir ?
Or to capsules of some kind ?

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Kefir is excellent. My doctor’s nurse also recommended Florastore and Culturelle. I get those on Amazon. I also take a very broad spectrum probiotic that has numerous lactobacillus and bifidum bacteria. My integrative practitioner office also recommended a bovine colostrum powder. I take all at the same time on an empty stomach, well away from antibiotics and before food by 30 minutes. This has just been my routine to keep my gut healthy. I have had zero problems, and my gut is very sensitive. I take 2 Florastor, 1 Culturelle, and one Ortho Biotic. I also either eat a serving of food quality plain yogurt or drink a glass of kefir daily. She did recommend a dose of psyllium fiber to bind the stools, in case of diarrhea. I have not had any, but I do make sure to get plenty of fiber daily. When I say I have had zero problems, I mean no gas or bloating, no nausea, and no diarrhea, and per my docto’s instructions, I take all my medications at the same time right before bed. I space them 4 hrs after my last meal and at least 4 hrs after calcium/magnesium supplements.

This has worked for me and enabled me to eat well. You will need to try to see what works individually. Knowing my gut, I knew that I needed to protect it aggressively. I hope all goes well for you.

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@formergardener

Kefir is excellent. My doctor’s nurse also recommended Florastore and Culturelle. I get those on Amazon. I also take a very broad spectrum probiotic that has numerous lactobacillus and bifidum bacteria. My integrative practitioner office also recommended a bovine colostrum powder. I take all at the same time on an empty stomach, well away from antibiotics and before food by 30 minutes. This has just been my routine to keep my gut healthy. I have had zero problems, and my gut is very sensitive. I take 2 Florastor, 1 Culturelle, and one Ortho Biotic. I also either eat a serving of food quality plain yogurt or drink a glass of kefir daily. She did recommend a dose of psyllium fiber to bind the stools, in case of diarrhea. I have not had any, but I do make sure to get plenty of fiber daily. When I say I have had zero problems, I mean no gas or bloating, no nausea, and no diarrhea, and per my docto’s instructions, I take all my medications at the same time right before bed. I space them 4 hrs after my last meal and at least 4 hrs after calcium/magnesium supplements.

This has worked for me and enabled me to eat well. You will need to try to see what works individually. Knowing my gut, I knew that I needed to protect it aggressively. I hope all goes well for you.

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Taking the antibiotics at night or 4 hours after a meal sounds like a good plan. What about the timing of the yogurt meal and the kefir?
Is that important?
I had previously bought an antibiotic supplement, but it was not either of the brands you mentioned.
Thank you for your detailed response.

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I usually have the yogurt or Kefir as an afternoon snack. No later than 3 pm because I don’t want to interfere with the meds and know that the meds can nullify probiotics taken too close with them.

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