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MAC antibiotics and side effects

MAC & Bronchiectasis | Last Active: Dec 29, 2023 | Replies (158)

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If anybody took clofazimine , please respond to this email and tell me if you had side effects and how you dealt with them. I have been on it, among a round of amykacin infusion and azithromycin (still on it since April) and I noticed my hair falls out, and quite a lot. I also read that the discoloration of skin is common- it scares me.
Thank you

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Replies to "If anybody took clofazimine , please respond to this email and tell me if you had..."

@liliana, the hair loss is not from the Clofazimine. I was on a clinical trial with only it for 6 months. It was 4 months on 200mg a day followed by 100mg daily.

I had some minor occasional loose stools which were handled with daily good probiotics and colostrum powder.

The skin discoloration is real. It is more of a bronzing. The skin and hair also become extremely dry, so you will need to deep moisturize.

After stopping the medication, your skin will slowly and imperceptibly return to normal. Be sure to use sunscreen, so you don’t end up with age spots more. They tend to hold onto the color change. It takes at least a few months for the discoloration to noticeably fade away.

The infection itself or even weight loss/inadequate protein can cause the hair loss, which usually does not manifest until a few months afterwards.

Don’t be afraid of the Clofazimine. My doctor told me that she uses it all the time with patients, and it is remarkably well tolerated. It is very important to take an excellent probiotic blend first thing in the morning on an empty stomach. Also include psyllium or another extra fiber supplement to help keep the stools firm, in addition to your diet.

I took clofazimine for about a year and a half. Yes, my skin darkened alittle (more like a tan for me!) No side effects I noticed with that. I did have partial hearing loss with the amykacin infusion. I stopped after 5-6 months.
Hope this helps!