Anyone on clofazimine?

Correction “person” should have read rifampicin.

@breatheeasy in a good way ? Do i have to lock myself up ?

@talias The compliments were always positive, even envious. It was just one more side effect to accept and deal with on the treatment journey. I have been off treatment since March now and the side effects of the clofaz took the longest to resolve, but now my skin is back to normal. Hang in there and good luck!

This is my second time on clofazamine. This time I am on it after having my PICC line removed in mid October ‘25. 100 Clofazamine, 600mg linezolid( started with 300mg to check if I tolerated it), and Aryikace nebulizer. I had a baseline EKG both times before I started the clofazamine. A possible side effect of clofazamine is QT Prolongation. My EKGs have been Normal Sinus Rhythm.
I am normally fair with some freckles. I have a nice resort tan. I am dry but nothing bad, but have not lost any hair. I have always gone to the dentist every six months. The hygienist said the plaque/tartar is now a light copper color as is my ear wax.
BTW sensitivity testing indicated the azithromycin I had previously been on the last time I was taking clofazamine ( and at that time Amikacin with sodium chloride nebulized )was not effective. Therefore I was placed on the Apex predator- linezolid. My colony count for M. Abscessus abscessus has been significantly reduced and I am coughing much less frequently and have a great reduction in sputum. I also have BE.
Background- I was originally diagnosed with M. Simiae -Jan ‘13 and was asymptomatic. Therefore I chose just to use the aerobika. I have had M. Abscessus since Sept ‘22. I am 77.5 yrs old and keep on keeping on.

I was on clofazimine and Nuzyra about a year. Did darken my already olive skin...good news is two sputum tests since never cultured any MAC or any other issues

I was on Clofazimine, nuzyra and tedizolid for 5 months. I didn’t get the “tan”. I got lots of GI issues from nuzyra. From Clofazimine, it raised my QT prolongation. My ID doc wanted to let the prolongation continue to rise past the recommended number and past the number my cardiologist recommended, so I stopped treatment because in addition to the risk of cardiac changes and GI issues, I had severe fatigue, dehydration, constantly recurring severe yeast infections and rashes, and recurring UTIs. I felt so bad I thought if I continued, I would die in a couple weeks. My ID doc wouldn’t consider lowering doses or frequency of doses. And negative sputums were expected by 3 months. No negative sputum even at 5 months. Not worth the risk, side effects and anxiety.

Left me with malabsorption. Turned me bright pink. But at doses of 200mg daily what did the clown doctor expect.
4 years on sever muscle atrophy, vascular problems, paper thin skin.
Clofazimine enteropathy.
https://pmc.ncbi.nlm.nih.gov/articles/PMC5084711/

I have been on clofazimine for well over a year without any symptoms. It does not bother my stomach at all, and I only have a tan (but it looks good). I am very fair skinned with blond hair (age 67). They told me my skin could be black, brown or red.

Of the following drugs I have been on, clofazimine is my favorite (I am on arikayce/amikaycin, ethambutol, rifabutin, azithromycin).

Does it work for me therapeutically? A little bit, but I still have MAC with cavities. It is supposed to help with MAC.

PLEASE read online if clofazimine is most effective with food. Some of these drug do better alone or together with each other or with or without food!! I now take mine with food because of what I read online, but I am not a pharmacist or medical doctor.

I hope this helps!

Post script:

from AI

"Yes, clofazimine is therapeutically best taken with food or milk. Here is why and how it improves your treatment: Maximized Absorption: Because clofazimine is a highly lipophilic (fat-soluble) drug, taking it with a meal—especially one containing fat—increases the total amount of medicine your body absorbs by about 60% compared to taking it on an empty stomach. It also helps you reach effective therapeutic blood levels faster."

BUT CHECK WITH DOC OR PHARMACIST FIRST