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Has anyone been prescribed Clofazimine for the treatment of atypical mycobacterium? My daughter has NTM abscessus and recently started Clofazimine. It took a while to get it, because it is off the market, and not FDA approved, but has been shown to help with atypical mycobacterium. Just...

Since I first wrote this blog, many things have happened. In regards to starting treatment for the abscessus, you have to have at least 2-3 positive cultures. At first, we were only able to get the positive cultures from a bronch, but now they are from sputum cultures and have become smear...

You have both described what my daughter has gone through the past several years. She would do oral anti's then IV's and at first, she could go about 3 months, then 2, then 1 month til the whole process started over and she was sick again. After about a year of this, her Dr. Decided to check for...

Our CF center is at a children's hospital and they have always wanted drug levels from peripheral or finger stick, not through her port or a picc line. Our home health nurse said that most kid hospitals want it that way for more accurate levels. She said the adult hospital usually doesn't care...

Hi Joni, Thanks for your response! I am in the process of trying to get an appointment at National Jewish Health. It's a long trip for us, but willing to do whatever we need to. When you say they look at things a bit different than our CF docs, what do you mean? Looking for any and all info...

Dr. Roe, If you don't mind me asking, what are the 2 anti's that can help treat the m. abscessus, that aren't approved yet? Thanks, Missy

When my daughter gets vancomycin, she used to get "Red man's," so now they give her benadryl about 30 mins prior to getting it and run it over 2 hrs. After about 4-5 days, her body gets used to it and we can stop the benadryl. Hope this helps, That "Red man's" is no fun! Take Care and feel...

Hi Tonya, I have also heard that you need to treat the m. abscessus with at least 2-3 anti's at a time to keep from resistance. I would definately ask about adding inhaled Amikacin with the oral clarithromycin. My daughter, Jess, has never been on less than 3 anti's at a time, but we have not...

Hi Tonya, thanks for replying to my post. Like your son, Jess has been on all of the same meds. She has had reactions or problems with, cefoxitine, tigecycline, zyvox and amikacin. She has been on a variety of combinations and is currently on; Amikacin, clarithromyacin and zyvox. I just hate...

<span style="font-size: small;">I am new to this forum,but have learned a lot from reading the other posts. My daughter, Jessica, is 15 with CF and has been culturing atypical mycobacterium abscessus, in her lungs, for about 2 years now. She has been on IV antibiotics for almost a year,to...