Clofazamine and rifampacin

Hi Marianne, wow you are great to be able to tolerate 5 antibiotics for your MAC. I was on 3 for 14 months and was only clear for a year and the MAC returned. I found the treatment tough going and my kidneys were damaged by rifanpacin. I did not research the whole thing enough. When I mentioned feeling ill, itchy etc I was told that it was unusual. I am not keen to go back on any antibiotics as they wrecked my gut. I was not told how I could avoid the various side effects plus I lost a lot of weight. I wish you all the best and hope you get through this. This site is great as you can compare notes with others and it gives your peace of mind. I do a lot of airway clearance and I exercise. I feel ok despite having NTM and bronchiectasis. I get very tired but have learned to pace myself.

@gemini1956 we all understand. All these drugs are concerning and we each do our best to weigh their pros and cons. The internet is a marvelous tool, I don’t know where I would be as a patient without it, but it can take a lot of time and the right questions to really get a complete picture, and even then most of us don’t have the medical training or experience to fully put all the information in context for our specific circumstances. I am not on Clofazimine, but had questions about its use with NTM patients. I asked a pharmacist in my local system about it and why it is so difficult to get and use (here in US) and she explained that it had a lot of problems when used years ago in the HIV community, leading to the restrictions, but she said her research showed that those same problems do not seem to come into play with immune-competent NTM patients. I attended a conference here in the US in May and one of the well regarded NTM specialist physicians spoke about the importance of improving access to clofazimine for NTM patients. I believe currently only the universities here in the US can access through a special program. But NJH, arguably the leading NTM medical facility in the US, does use clofazimine when they feel it’s appropriate. I suspect all of the university based NTM centers here do. All to say, be careful about incomplete bits of information, they don’t give the full story. Of course, I am not saying clofazimine doesn’t have risks, all these antibiotics do, but we want to do our best to make our decisions based on the best and most complete information available. While the internet may give us an informed start, our doctors, pharmacists and other members of our medical team are best positioned to help us in this decision making. Good luck.

Thanks so much for replying. It’s easy for the docs to prescribe - they’re trying to do their best - BUT they, themselves, AREN’T on the regime so it’s hard for them to relate to the journey we’re on. As a holistic practitioner, now retired, it’s really tough to take on board the level of ‘stuff’ they urge me to take. I have only been on
regime 2 weeks but already feel I’m drowning in the regime. The thought of skin colour changes, depletion of hearing and eyesight is, frankly, utterly depressing. I already want to quit and face the future without the drugs. So daunting but the drugs are not right - and I feel overdosed already. 😢 Keep strong. X

Lovely to hear from you. Please report any side effects and ask if you need to be on so many antibiotics. I was in daily treatment to start with and I could hardly function. I asked to reduce the big 3 to three times weekly. It gave me some respite and I took Ondansetron to help with the nausea. I was able to return to work but life working 12 hour days took its toll. I moved to a new school where I teach 3 days a week. Everyone is very understanding. It is good to explain to people how you feel. It is all about pacing yourself and sticking to a routine. Sleep is most important too. Stay in touch and let me know how you are coping. Niamh x

Hi I have been on clofazamine, Amykacin (nebulized) and Nuzyra for over 2months for Mac Abscessus
I was worried about the clofazamine too but I found a medical video that had a pulmonary on there that said all those are extremely rare and my pulmonary said the same. No skin problems so far...with all three I just have a slight tight chest, some coughing(normally I only coughed when doing a treatment previously) a little nausea at night a few times and some fatigue here and there.
I did do a baseline hearing and eye test b4 starting. I will likely check those every2-3 months.