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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angeles31 | @angeles31 | Mar 4, 2023

In reply to @colleenyoung "Hi @angeles31, I moved your question about Clofazamine to this discussion on the same topic: -..." + (show)

Thank you 😊

bnthorson | @bnthorson | Mar 5, 2023

In reply to @angeles31 "I’m glad to hear you had no issues No change in skin color ? How long..." + (show)

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!

angeles31 | @angeles31 | Mar 5, 2023

Did you take any additional antibiotics with Clofazamine?
Thank you

angeles31 | @angeles31 | Mar 7, 2023

In reply to @colleenyoung "Hi @marlin and @heathert, I moved your question about clofazimine to this discussion: - Clofazimine for..." + (show)

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.

angeles31 | @angeles31 | Oct 12, 2023

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

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

formergardener | @formergardener | Oct 13, 2023

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

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.

angeles31 | @angeles31 | Oct 13, 2023

In reply to @formergardener "Clofazimine is very tolerable. Just make sure to take a very good probiotic a minimum of..." + (show)

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 ?

formergardener | @formergardener | Oct 13, 2023

In reply to @angeles31 "I appreciate your comments very much. They are reassuring and the recommendation about probiotics is vert..." + (show)

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.

angeles31 | @angeles31 | Oct 13, 2023

In reply to @formergardener "Kefir is excellent. My doctor’s nurse also recommended Florastore and Culturelle. I get those on Amazon...." + (show)

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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formergardener | @formergardener | Oct 13, 2023

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.