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Mycobacterium abscessus - therapy with clofazimin?

Question
Dear expert team,
In 2010 I have been diagnosed to have beneath Pseudomonas also Mycobacterium abscessus. After long-term i.v. antibiotic therapies the germ was not eliminated. It causes hard problems. Since August 2014 the infections occurred more and more often and in the lung abscesses developed as well as increasing bronchiectasis. My CF center proposes a therapy with cefoxitin (which I do for several month) and now additionally the leprosy drug clofazimin.
My question: are there any studies or experience with these drugs?
The side effects (discoloration of the skin) are frightening me very much.
Furthermore the therapy resembles due to the not enough researched mycobacteria rather a "trial and error". As I want to delay a transplantation due to the high risk of the germ as long as possible, I try to exhaust all therapeutic possibilities. Can you make a recommendation about clofazimin?

Many thanks for your answer in advance!
Patient female, 33-years-old FEV1 28-40%
Answer
Dear questioner,
before I would like to turn to your question I would like to emphazise, that you should take into account that we cannot give you advice via the Internet! We can only give you some information. With our information you could turn to your CF physician and discuss with him the best therapy for you. The treatment of atypical mycobacteria, especially with mycobacterium abscessus, is not easy and not always an elemination of the germ can be achieved. The aim of the treatment should then be a reduction of the number of germs.
You ask, wich experience, respectively studies there are about the treatment of mycobacterium abscessus (M.a.) with clofazimin. There are no evidence based recommendations about this. For answering your question, one can only consult expert advice. Clofazimin (Lamprene®) is on the one hand mentioned with an effect on mycobacterium abscessus of about 90%, however in Germany there is no general usage in the therapy against this germ, as its efficacy is comparable to imipenem (plus cilastatin). Clofazimin as well as cefoxitin (Mefoxitin®) are in Germany only available via the foreign pharmacy and this requires always at first an affirmation of the the respective health insurance.
In the therapy of M.a. in general the following drugs are used (always in respective combinations and for a sufficent time period). As an example: intravenously: amikacin 1 x 1000mg + imipenem 3 x 500 (3 x 1000); orally: clarithromycin 500 1-0-1, levofloxacin 500 1-0-1, moxifloxacin (Avalox®) 400 1-0-0, Linezolid (Zyvoxid®) 600 1-0-1 and inhalative: amikacin 500 1-0-1 (if the health insurance is covering the costs).

I hope to have helped you with my remarks and stay with my best regards,
Yours sincerely,
Yours Dr. med. Christina Smaczny
06.05.2015