Mycobacterium avium MAC Treatment

[macnsyl]

Based on sputum tests my resperologist is starting a treatment for MAC Mycobacterium avium. Treatment is heavy antibiotics for an extended period of time. Anyone else had this? Results??

[TomTitTot]

Hi Mac, in reply to your post, I had that nasty little bugger several years ago. I took three oral meds for four very long years. At the time, two years was standard, unfortunately I wasn’t so lucky, thus four. I’m pretty certain it depends on whether you have a high or low bacillary load that determines both antibiotics and duration. I have a friend who’s being monitored for MAC but so far has required no treatment.

Touch wood, I’ve been clear of it for over twenty years now. I can’t say I have the greatest lungs but that’s a genetic issue. I was over prescribed steroids which diminished my immune system and that is how I got it. I can say that the only problem I actually had with the drug regime was one medication in particular turned my skin a shade of lobster and I found that rather demoralizing!

I think you’ll find that if you stick to whatever you are prescribed faithfully you’ll get through it better. If you do any research, always bear in mind that the worst case scenario best exemplifies the case study and need not apply to you.

I wish you all the best ‼️

Anne

[macnsyl in reply to TomTitTot]

Anne Thank you so much for such a detailed report. I must admit I had some misgivings, but you make me less concerned. Thanks so much

[Hidden]

There are a small number of people on the boards receiving treatment for an NTM, a group of atypical bacteria that are becoming increasingly common - MAC is where you are infected with one of 3 specific non-tuberculosis mycobacteria commonly found in the environment: either m.avium, m.intracellulare, or m.chimaera. Alongside m.abscessus complex (MABSC), it’s the most common problem-causing NTM complex in humans, the primary difference between the two being that MAC is slow growing, where MABSC species are rapid growing. My daughter has cystic fibrosis and grew a single isolate of MAC a couple of years back, but because the treatment burden is so heavy, and because they’ve found that positive sputum can indicate transient colonisation rather than active infection, in cf they will only commence treatment if they have 3 positive sputum cultures over 3 months. Audits have shown that about 40% of MAC cultures in cf patients turn out to be transient rather than infections requiring treatment. We’re currently going through the culture process for confirming MABSC having had a positive isolate for that at the start of June; only about 10% of positive cultures for m.abscessus turn out to be transient, but we’ve got everything crossed. Of the two complexes, m.abscessus is considered clinically more problematic than MAC in all lung diseases.

I can’t give you any direct experience of the treatment regime, but hopefully those actively dealing with NTM will be along in due course. I can tell you that it can be successfully treated, though, and the success rate with MAC is generally better than with MABSC. A recent study from the US involving more than 3000 patients (all with diseases other than cf) gave the eradication success rate for MAC to be about 69%.

[macnsyl in reply to Hidden]

Thanks Charlie for the detailed explanation. I had three positive tests that precipitated the diagnosis. I wish your daughter all the best, CF is a terrible disease through no fault of her own. With COPD I can only blame myself for smoking for 35 years.

[Clareyg]

Hi I am one of the contributors currently having treatment for MAC ( amongst other stuff). I started on 16/8/20 so am one year in and was told in July it’s for another year and then see because it’s still lurking. The reason the consultant may be having a watching brief over your friend is because the treatment can be quite tough to withstand and there is a high failure rate with those that either can’t withstand the antibiotics regime or whose sputum doesn’t convert (clear) when they expect it to. With me the problems being caused by the MAC were so pronounced it was a no-brainer to start and if your consultant is recommending you start treatment it will be because they believe you need to. The first month is really quite rough so don’t plan to do much in that time as you might not feel like it. I certainly didn’t. I still have lots of side effects with some brutal GI issues which of itself is causing lots of problems for me despite trying all sorts of pro and prebiotics. Nothing works as the AB combination is very strong. I also have tinnitus and transient deafness which is a side effect and if I lose my hearing I now stop the drug that causes that for a couple of weeks and it has so far come back. Then I restart. This is the advice of my consultant.However all of this is countered by the upside- which is significant. I feel so much better than a year ago and am glad that I started the regime. I’m hopeful it will go and not come back and having done one year I now know what to expect and the upsides of getting rid of this pesky bug far outweigh the downsides as far as I am concerned. It is However very difficult to deal with GI problems but Ive learnt to manage my life around that for now and my lungs are so much better.I hope that helps to set your mind at risk. Good luck.

[macnsyl in reply to Clareyg]

The Dr has made me aware of the possible side effects and I hope I can handle them! I is reassuring though that your lungs allow you to feel better. Thanks so much for your help.

[Response]

My mother has this - she was prescribed tons of specific antibiotics for 2 years. It seemed like a long time but it was now quite a while ago so if you're been prescribed that then when you're free of the bugs you won't remember the time.

I just wanted to tell you about my elderly mum's situation so that you don't have the same issue. She is very slight of build, and as these antibiotics split between needing to be taken with or without food alongside her other pills which too impacted the time she couldn't eat, and unfortuately she has a terrible acute liver reaction. So do monitor that very well with your respiratory team so that you don't have this same issue.

[macnsyl in reply to Response]

Thank you so much for your info. Yes the Dr wants liver function every month.