Hello! Below is a link on clofazamine A friend had developed a rash from the drug while she was on it. I hope that other members chime in with their experience. https://www.drugs.com/cons/clofazimine.html

Thank you for the link, I have been warned that there most likely will be skin discoloration at the minimum. I am concerned about all of the side effects, including any visual issues. Wondering if anyone has taken the clofazamine, can explain what it was like, and has any ways of dealing with it. For instance, tons of lotion? Thank you in advance.

I am in my last few weeks of IV treatments, so I've been on 4 antibiotics. After the IV comes out it will be 4 antibiotics, oral and inhaled, including this clofazamine. I will also be using inhaled Amikaycin, so anyone who has experienced that and has any tips - I'm interested! thanks again.

Hi Deb,

I was on Clofazamine  and two other drugs twice for 12+ months a year apart.  Skin discoloration was minimal but stay out of the sun.  Loss of appetite and weight loss.  My last broncoscopy cultures came up negative so off the drugs for now.  Next CT scan is in October 2020.  (Mycobacteria Avium Complex)  Hope you do well.
TS

Hi Deb,

I was on Clofazamine  and two other drugs twice for 12+ months a year apart.  Skin discoloration was minimal but stay out of the sun.  Loss of appetite and weight loss.  My last broncoscopy cultures came up negative so off the drugs for now.  Next CT scan is in October 2020.  (Mycobacteria Avium Complex)  Hope you do well.
TS

Hi Deb,

I was on Clofazamine  and two other drugs twice for 12+ months a year apart.  Skin discoloration was minimal but stay out of the sun.  Loss of appetite and weight loss.  My last broncoscopy cultures came up negative so off the drugs for now.  Next CT scan is in October 2020.  (Mycobacteria Avium Complex)  Hope you do well.
TS

Hi Deb,

I was on Clofazamine  and two other drugs twice for 12+ months a year apart.  Skin discoloration was minimal but stay out of the sun.  Loss of appetite and weight loss.  My last broncoscopy cultures came up negative so off the drugs for now.  Next CT scan is in October 2020.  (Mycobacteria Avium Complex)  Hope you do well.
TS

Hi Deb,

I was on Clofazamine  and two other drugs twice for 12+ months a year apart.  Skin discoloration was minimal but stay out of the sun.  Loss of appetite and weight loss.  My last broncoscopy cultures came up negative so off the drugs for now.  Next CT scan is in October 2020.  (Mycobacteria Avium Complex)  Hope you do well.
TS

Hi Deb,

I was on Clofazamine  and two other drugs twice for 12+ months a year apart.  Skin discoloration was minimal but stay out of the sun.  Loss of appetite and weight loss.  My last broncoscopy cultures came up negative so off the drugs for now.  Next CT scan is in October 2020.  (Mycobacteria Avium Complex)  Hope you do well.
TS

Hi Deb,

I was on Clofazamine  and two other drugs twice for 12+ months a year apart.  Skin discoloration was minimal but stay out of the sun.  Loss of appetite and weight loss.  My last broncoscopy cultures came up negative so off the drugs for now.  Next CT scan is in October 2020.  (Mycobacteria Avium Complex)  Hope you do well.
TS

Hi Deb,

I was on Clofazamine  and two other drugs twice for 12+ months a year apart.  Skin discoloration was minimal but stay out of the sun.  Loss of appetite and weight loss.  My last broncoscopy cultures came up negative so off the drugs for now.  Next CT scan is in October 2020.  (Mycobacteria Avium Complex)  Hope you do well.
TS

TS- thank you for your answer. What happens if you go in sun, burn?

I’m on 4 antibiotics now and it’s hard to know what causes what at times. Thanks for the heads up on loss of appetite.

This whole experience is difficult emotionally- have you ever get that? Glad to here it sounds like it worked for you though

Deb19,

Hello! Yes, the whole experience is overwhelming to say the least. It is a lot of work organizing the multiple specialist doctor a, labs, medication, other diagnostic tests.

However, hopefully, it all pays off and you get to the other side. We are here for you.

Thank you Ksmiles123! It certainly is a lot of work!

Hi Deb, my wife was on clofazimine for almost a year as part of her treatment for m abscessus. The skin discoloration occurs over time - it’s more of a nuisance than anything with everyone asking how you’ve gotten so tanned. My wife’s hands got particularly dark. You definitely need to be careful with direct, strong sun in terms of getting a sunburn. She also got flaky, scaly, dry skin over time that required her to lower the dose. By that time, fortunately, she was already negative on sputum. I wish you the very best...it’s a journey.

Thanks for sharing this info! So helpful to hear from people who’ve been there