Anyone on clofazimine?

@westcottkm3040 My sister told me I looked like I had a tan, so not really very orange.

Good morning. I was on clofazimine for 18 months in place of Rifampin, due to adverse kidney damage from the Rifampin. I have been MAC free for 2 years now thanks to clofazimine. It was round 2 for getting rid of MAC and the clofazimine worked. I converted in 2 months. I cant say enough about clofazimine. I did get a light tan, which was fine. Initially I was petrified to start it as I had looked online at what people looked like while on it and it was awful. Later I realized those unfortunate individuals were on clofazimine due to leopracy which has a completely different outcome so I gathered my senses and started the regimen and I am so glad I did. Please dont be discouraged by people saying you will turn orange when i think that is quite an exaggeration when you will actually look like you live in Florida and hit the tennis courts every day! Also the tanning comes in gradually. You wont even notice it for some time if you notice it much at all. Best to you!

@greeneyes8 thank you for the info and advice. I’m pretty pasty. But was in Yuma last winter so did have a winter tan. Guess it will be two winters in a row.

I was at NJH and was told that skin changing color seemed to be the most predominant side effect-not sure how long it takes to return to normal. My Dr told me that most of her patients like it-tan look. Nausea as well, but not as bad as Nuzyra. There is a long list of side effects-like all of these drugs. I'm still on "watchful wait" and now testing negative but would take if needed. Have you been retested for susceptibility to see if one or more of the antibiotics is no longer working? Do you have cavity disease? I have read that some antibiotics work better than others for those with cavities. I assume you're nebulizing 2/day with 7% saline. Sounds like your dr is on top of things, to add something at this stage. Arikayec is often added if conversion doesn't occur in first 6 months.

@greeneyes8 thank you for this very positive post! At only two months in, and reading what people have said in the past, I’ve had some trepidation. I really appreciate you taking the time to say what you did. I have a feeling the possible side effects I’m having right now are from the azithromycin.

Me. I am on 100mg/OD. In 2023 from late June through December I was on the same thing. I am pale with freckles. I looked like I had a light tan and my freckles became more pronounced. Those were the only side effects that I had. I am on it again With the same dosage. I just started two weeks ago along with LINEZOLID (PO)and ARIKAYCE – nebulized.

Had to discontinue Clofazimine, as I was experiencing severe fatigue and some peripheral numbness/tingling in lips and fingers. Too bad, as it did seem to help bring up more productive sputum. I'm already on Azithromycin, Ethambutol and Arikayce. Had to stop Rifampin/Rifabutin long ago due to allergic reaction.

When you stopped taking it, did those symptoms go away?
I’m already tired from the rafubutin. Hope it doesn’t get worse.

I’m taking it and have not suffered much in the way of side effect. Been on it almost a year along with azithomyacin and ethambutol. . Just started back on aricayce but after 6 days I took myself off it due to it making me cough more and it effected my mental status so bad.

I started mac treatment 11 months ago. Azithromycin ethambutol rifampicin. Had to stop ethambutol for reasons of neuropathy. Still have a numbness in toe and runs of vibrations through foot. In place I was given clofazimine. I get stomach or GI problems one hour after taking clofazimine. I take these 3 x pw. I have just had to have a blood platelet transfusion as my count was at 5. So all meds stopped for 2 weeks. I am reading online that it’s likely rifampicin particularly if taken intermittently rather than every day. But I must say I’m reluctant to go back on any of them again. It says if they give me the person again it could come back more severely and I think this was severe enough so I’d be interested if anyone else had these side-effects and what you did I’m seriously thinking just not to go back on treatment.