Hi there, I really would love to hear from fellow patients who having or had NTM treatment. It has been suggested that Clofazimine would possibly be effective in my treatment. This really worries me though as the almost definite side effect is skin discolouration.
Would really appreciate anyone who knows more?
I have just looked up that drug. It says that it is used against leprosy but not recommended for other mycobacter infections. I would be very cautious before agreeing to have it. There are other drugs used for NTM. You need an expert in the condition.
Thank You so much. I am currently in hospital having NTM treatment & I am researching like mad to consider alternatives. I am very reluctant however understand that studies have shown that it is successful in treating my particular Mycobacterium.
Thankfully my doctors are understanding.
Thank You so much again
I hope that it all goes well.
I could be wrong, but I don’t know that you’ll find many people with experience of clofazimine on the forums, unfortunately. I know of the drug due to researching NTM when my daughter had her first positive for MAC last year (she has cystic fibrosis), but she ultimately only had the one positive culture, so we haven’t had to worry about treating it so far. I can tell you that it’s not actually licensed as yet in the UK for NTM use, I believe specific trials are ongoing, and although drugs being used off licence isn’t unusual, it does actually suggest that the docs must have a good reason for believing it’s an appropriate course of action in your case. Have you asked them about the specific reasoning? My understanding is it’s not regularly a first line choice because of how hefty it is in terms of side effects generally and the psychological effects that things like skin discolouration can cause. I can completely understand why you would be hesitant if not outright reluctant to take it on those grounds, and I would have to be absolutely certain it was the correct choice if it was suggested for my daughter at any point, but my understanding is that the changes are usually reversible once treatment stops, although it may take a while.
I think you have to fully understand why they’re recommending it so that you can properly weigh that up versus the particular risks that concern you, and offset that against the possible risks of not successfully treating it from the outset. An NTM isn’t something you want to leave unchecked for any significant length of time, and they are a real problem to deal with, but it’s a big call to make when you also have to be able to live with the side effects.
I don’t know how medically minded you are, and it may not be of help, but I wondered if the British Thoracic Guidelines on treating NTM could be useful in some way:
thorax.bmj.com/content/thor...
It lists the usual regimens for treating the most common NTMs in non-cf patients, and does mention clofazimine, although doesn’t appear to go into any great detail. It may suggest some questions to ask your consultant, though, about why they feel clofazimine is the best choice, so you can make a properly informed decision.
Anyway, I hope that helps a little bit, and maybe someone can come along with some direct experience now and prove me wrong to properly help you out!!
Hello there,
What amazing advice and I thank you so much for taking time to be so precise.
You have confirmed my reluctance on many levels! As far as I know at this stage as I am currently in hospital having NTM treatment, it is successful in treating one of my mycobacterium, which is Abscessus. I don’t know how successful on the other, which is Chimaera.
I am extremely reluctant & as you mentioned I feel I am a little too delicate to emotionally deal with the consequence of the probable side effect of skin discolouration.
I am certainly learning after this has ongoing for four years!
I will certainly take a look at that link.
I hope your daughter is doing okay and again, you really don’t know how valuable your advice has been.
Kind regards
Faye
Hi Faye,
Glad I could be of a little bit of help. My daughter is 12 and unfortunately doesn’t keep particularly well, but the upshot of that is that I can occasionally help others out. She has chronic pseudomonas with several resistances, a chronic fungal infection we think is being caused by e.dermatitidis, and has grown a couple of other weird and wonderful things as one-offs over the years. She also tends to have a harder time with bacteria not generally considered to be a big problem or even routinely requiring treatment, like s.maltophilia.
M. Chimaera is one of three NTM that make up Mycobacterium Avian Complex, or MAC. I know this because the child grew m. intracellulare last winter, which is one of the other two mycos that make up the complex. In the grand scheme of things, if you were grading NTMs, abscessus complex is the one that’s top of the tree for being a big issue and difficult to treat. MAC is still a massive pain and you really do want shot of it if in any way possible, but it’s considered slightly less of an issue overall. To give you an example within a cf context to illustrate this, abscessus complex is initially hit with a three week course of three different IVs, or two IVs and an amikacin neb, followed by a minimum 18 months of daily treatment with three orals, a neb, and with subsequent IV cover during admissions as appropriate or in the event of a flare. MAC is usually treated with three different orals over a minimum of 12 months. In both cases, the team we’re under stipulate that a cf patient can’t stop treatment until they’ve been completely negative for 12 months, and won’t be considered clear of NTM until they’ve had a further 12 months of negative culture. In practice, that means patients aren’t considered free of NTM until a full two years has passed without growing it. The reason for that is because they’re generally very slow-growing, which is partly why they can be almost impossible to pick up in the early stages. The rigorous nature of treatment is also why many cf centres don’t start treating an NTM until they have 3 positive sputum cultures, ideally in a row, just in case it turns out to be a transient or incidental airway finding rather than an actual infection, as thankfully turned out to be the case with us.
Clofazimine can be effective against MAC as long as it’s sensitive to it. Because they are difficult to treat, the consensus with NTM generally is that you follow the culture sensitivities from the lab, moreso than you might with ‘normal’ bacteria where we know that what we see in the lab isn’t necessarily what will work in the lungs and vice versa: now that I know you have both MAC and MABSC, immediately going for clofazimine as part of the ‘maintenance phase’ regimen potentially makes much more sense if it’s something that both mycos are showing sensitivity to in the lab. From experience, finding two antibiotics to try and treat multiple different bacteria with equally different sensitivities can be pretty difficult even when not dealing with NTMs, so trying to come up with a combination they’re confident will work in this case without having you on 6 or 7 different antibiotics (and all the potential issues that would come with that) is probably going to be a bit of a challenge. It’s purely my personal opinion, but taking the fact that you have both into account, that would potentially change my stance a little more towards considering the clofazimine. Obviously I can only talk hypothetically, but I think I would be much more open to it under those circumstances than if we were just dealing with one or the other, particularly if baseline lung function isn’t great to begin with - as is the case with us relative to her age - or had been declining quite quickly prior to diagnosis.
You really are in a bit of tricky one, and I do really feel for you, but clearing both infections isn’t completely out of the realm of possibilities if they can find a combination of drugs that will cover both. It’s also good that the team are understanding and giving you time to consider the options, but I do think you need to have a really frank, honest conversation with them about what the reasoning is, and also what they think might happen in the longer term if you decide not to go with the clofazimine. If they feel that’s your best chance of clearing both, and that not taking it could result in a serious decline, then that really needs to be given proper weight in the final equation. Whatever you do ultimately decide to do, though, please let us know how you’re getting on?
Hello Charlie,
Gosh! I’m overwhelmed by your knowledge...thank you so much. Unbelievably helpful.
I am currently sifting through the points & my many notes that have been made just so I can get a clearer picture & understanding of what I’m dealing with....being isolated in a hospital room makes that very easy 😄.
Your daughter really has had a tough time, I really feel for CF patients and all that they suffer. It must be so very hard to find balance with it all when the condition makes you so prone to further illness.
One thing for sure is that she is certainly extremely fortunate to have a very caring Dad.
Thanks again
Faye.
Hi Faye
Sorry to hear your news and dilemma. M abscessus is a rapid growing mycobacterium and M chimera is a slow growing one. Neither are part of the MAC version which is M avium and M intracellulare. If you are unfortunate enough to develop an NTM M abscessus is one of the more difficult ones to treat although all NTMs are treated in broadly a similar way which is to hit them really hard with at least 3 different ABs possibly 4 at the same time. I have just been diagnosed with MAC ( developed from having Bronchiectasis, ABPA and pseudomonas and a large slice of bad luck as my consultant put it ) following a visit to a tertiary care hospital as my consultant wanted a third opinion on my issues. My treatment is now starting with what they call the Big 3 ABs and the side effects are just hideous (including deafness, vision loss, skin colour issues teeth colour issues GI problems just to name a few.) clofazimine is a second line treatment when one of the three I have started (ethambutol) either fails or cannot be tolerated due to vision loss etc..There is a Facebook support group for those of that have to put up with an NTM find useful and there is masses of info on there including someone who was switched to Clofazimine from ethambutol so you could see if you can join the group (it’s a private group so you need to apply) and then you could read all the comments posted on your proposed treatment plan. Whatever you decide none of the treatment for NTMs is without some sort of pretty major side effects- that’s the nature of Mycobacterium. I’ve been told I’m looking at 18-24 months on 4 lots of ABS a day - 3 oral and one inhaled but my consultant said to me on Tuesday you are not well and we have to treat this to try to limit further lung damage and decline.
Good luck - tell us how you get on.
C
Not trying to be funny or pedantic, and you clearly have a lot more personal experience with NTM than me, but m. Chimaera is now categorically considered to part of MAC alongside avium and intracellulare.
sciencedirect.com/science/a...
bmcinfectdis.biomedcentral....
Thanks for your correction. I just wish I didn’t have any NTM whatsoever as I imagine Faye doesn’t either! C
My heart sank with my daughter’s positive as we’d collectively been worrying about NTM for a while, and I can empathise to some degree with how utterly s*^t dealing with it must be, but I’ll obviously never fully understand what it’s like beyond supporting the child through her journey. I was massively pleased that someone could come along and reply to Faye with direct experience rather than mostly academic knowledge, even though I obviously wouldn’t wish an NTM on anybody. It’s yet another club no one wants to join.
I really hope you manage to turn the tide on your NTM and that treatment has you starting to feel a bit better in time.
Thank You Clare,
More unbelievably helpful advice!
I’m currently in hospital, almost two weeks now. It’s been fairly tricky getting a balance with the IV’s along with anti sickness drugs & oral antibiotics. I’m definitely getting there but the proposed introduction of Clofazimine is very daunting. I’m learning the IV’s with a plan to administer at home for up to 12 weeks....I can’t see me lasting as long as that but we will see.
It really is a cocktail & I suppose as you say there are always some awful side effects but it’s finding the right plan for you, along with tolerating a fairly reasonable mix of side effects!
Keep in touch with how you’re getting on & I wish you well.
Faye.
investwm.co.uk/2020/01/27/n...
I come across this. Obviously in just treating the abscessus.
Wow that’s really interesting. I can see it’s CF related research which unlocks funding for drugs not otherwise available to those with BX but are you intending to show it to your consultant?
The longest home IVs I managed was 3 1/2 weeks and the line needed changing in that period because it got kinked. Gosh if you manage 12 weeks that will be seriously impressive. Keep me informed how you go. C
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