Clofazamine and rifampacin

Posted by gemini1956 @gemini1956, Aug 20 2:05am

Me again! Started Big 5 MAC treatment a week ago as follows:

1st week: amakacin (iv) + azithromycin + ethambutol
2nd week: starting on clofazamine 20mg plus the other 3
3rd week: starting rifampacin plus the other 4
4th week: last week of IV amakacin then remove iv and start nebulising arakace plus the 4 oral (azithromycin, ethambutol, clofazamine and rifampacin.

I’ve not seen many comments regarding clofazamine or rifampacin skin risks or effects. I’ve scared myself rigid by looking at photos of patients on rifampacin and/or clofazamine who have developed hyperpigmentation (not just skin discolouration). I’ve also noted that it’s not uncommon to have adverse skin disorders caused by these 2 drugs which sometimes take months, years to resolve or can’t be reversed at all! So, anxiety level has, again, gone through the roof! I appreciate not everyone has had skin side effects (except skin tinting) but hyperpigmentation, from what I’ve read, still a fairly common occurrence.

I’ve been put on 200mg clofazamine and was supposed to add it in to my regime yesterday but I don’t want to risk it. Any advice or experience to share regarding to being or having been on these 2 drugs would be really appreciated. If you don’t want to post a public reply, please email me your personal experiences. Many, many thanks, Marianne

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lvalenti | @lvalenti | Aug 20 7:04am

Gemini 1956 I was on Clofazimine for about eight months. I was very nervous about taking it but for me was the easiest of all the MAC medications. I did have darkening of skin but that wasn’t a problem as a I got a lot of compliments on my tan and questions about where I had vacationed. The only negative I experienced was itching. I used Gold Balm anti-itch cream all over after a shower and that helped a lot. I would not hesitate to take it again if necessary.

gemini1956 | @gemini1956 | Aug 20 8:31am

In reply to @lvalenti "Gemini 1956 I was on Clofazimine for about eight months. I was very nervous about taking..." + (show)

Hi Ivalenti, thanks, so much, for your reply - it’s very reassuring.

I already have quite tanned skin - my skin is olive/sallow colour in the winter but I tan very easily, without sunbathing, during summer months- even in Uk (where I live). I also love the sunshine and have a holiday in Greek Islands booked for last week of September. Then my partner and I are heading off to Spain for 5-6 weeks from early November. So I’m worried because on clofazamine, I understand you have to avoid the sun or use total sunblock. I’m also concerned about hyperpigmentation which I understand can be a significant side effect (not just Clofazamine ‘tan’). This can take months or years to be reversed. Rarer in Caucasian population than in Asian communities but, nonetheless, it can happen. I’ve seen some photos of patients affected and I am still rigid with anxiety - not, by far, my normal effervescent self. Im wondering if I should just postpone Clofazamine and Rifampcin (due to start that next week) until the middle of December (when I’m home from travels). I’m aware that some of the worst cases of Clofazamine (and Rifampicin) skin problems do leave patients with a real depression. I really do not want that - for me or my partner, or our family and friends. I’m normally such a buoyant, happy soul but the concerns over these 2 drugs are affecting my equilibrium so much right now. I’m coping very well with ethambutol, azithromycin and amakacin iv.

Thanks again for your positive story. 🙏🙏

susies215 | @susies215 | Aug 20 10:10am

Dr wanted me on clofazamine but I have refused multiple times. Dr keeps saying it just causes a nice tan. That is not true according to my research. I’m not risking my skin turning gray or blackish. I am on Amikacin IV, Nuzyra oral and Sirturo oral. I have mycobacterium abscessus. Took me off Impenium and teflaro iv due to 24/7 nausea. I’m also dealing with advanced lung cancer and on chemo and immunotherapy. Good luck to you

gemini1956 | @gemini1956 | Aug 20 11:10am

In reply to @susies215 "Dr wanted me on clofazamine but I have refused multiple times. Dr keeps saying it just..." + (show)

Dear Susie,
I love the strength and resolve you’ve shown. I hope and truly believe you will stay strong and we must never forget what determination of the human spirit contributes to well-being AND healing……. people like you are still confounding science. Sending you and all of you on this journey positive wishes. 🤗

reneemc | @reneemc | Aug 20 12:29pm

I’ve been on Clofazimine almost a year. Skin looks tan. I combat the dryness with jojoba oil. No other side effects.

gemini1956 | @gemini1956 | Aug 20 1:01pm

In reply to @reneemc "I’ve been on Clofazimine almost a year. Skin looks tan. I combat the dryness with jojoba..." + (show)

Thanks for update, Renee. What dose are you on? 🙏

susies215 | @susies215 | Aug 20 6:41pm

In reply to @gemini1956 "Dear Susie, I love the strength and resolve you’ve shown. I hope and truly believe you..." + (show)

Thank you

fjc0830 | @fjc0830 | Aug 21 8:56pm

I was on Rifampin, ethambutol and clofazimine from 4/23 to 6/24 ( 15 mos.) I could not tolerate the azithromycin. My skin looked tan and still does- but not as much. My brown spots got darker. I am now culture negative for both MAC and M. abscesses. Had been positive for both. I do wonder if the fact that I still have Clofazimine in my body (from the discoloration) is having a protective effect against the bad bugs.

gemini1956 | @gemini1956 | Aug 22 1:06am

In reply to @fjc0830 "I was on Rifampin, ethambutol and clofazimine from 4/23 to 6/24 ( 15 mos.) I could..." + (show)

Thank you for your positive feedback. You raise an interesting point regarding the colour (the dye) possibly having a ‘protective’ effect. It is common, I hear, for the tanned effect to last months or years before dye leaves the soft tissues of the body. Sadly, delving into the ‘net for images of Clofazamine effects only enabled me to see the horrific, worst cases - to the extent that I had sleepless nights and continue to fret. My partner said “Marianne, you’re only going to see ‘bad’ examples of adverse side effects of any drug - ‘ordinary’ images of side effects of Clofazamine are never put out for viewing”! I used to be a ‘can do, will do, must do’ sort of person but the anxiety I’ve felt about, especially, having to start on such a high dose of Clofazamine (200 mg) AND Rifampacin alongside the other 3 has been personality changing. Clofazamine has been, I understand, banned by the FDA except ‘“off licence” so there must be valid reasons for this decision. Here in the UK it is still widely prescribed/used in most NTM/MAC treatment regimes.

damcipro | @damcipro | Aug 23 7:23am

In reply to @gemini1956 "Thank you for your positive feedback. You raise an interesting point regarding the colour (the dye)..." + (show)

I went through this treatment here in UK (Manchester)
Amakacin (4 months)
Rifampin
Azithromicin
Clofazimine 200mg
The clofazimine turned me bright pink to point i looked ridiculous
The pink dye in the drug was coming out on my clothes/ bedding and my shower sponge was pink.
The recommended dose is 100mg . I think my consultant was using me as a Guinea pig. I started having blurry vision and developed foaming urine then started having numbness and sever muscle wasting.
After having an eye test, residue from the pink dye could be seen in the back of my eye .
I quit the treatment at 6 months. I had one negative sputum sample but toll it took on my body was too much.
If you’re going to try it I would go low and slow
My consultant was just negligent giving me way to much in my opinion.
My skin now is transparent/stretchy/itchy and wrinkled. My hands look like I’m 90 years old