Non Tuberculosis mycobacteria

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Katie615

Member
Mom2Brett,

I don't know if you do this or not but try having him do his albuterol before the treatment.
Also, is he doing all his treatments at night or just amikacin? If not doing them all together might help open his chest (albuterol, hypersal, vest, amikacin, spiriva, and foradil are my routine)
The only other suggestion I have is try doing his amikacin at a different time and see if that changes anything.
Hope he feels better soon.
 
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MichaelL

New member
semnle34 said:
It will be a long course of IV Amikacin and Cefoxitin along with oral Biaxin (Clarithromycin). He thinks somewhere up to 6 months.
Click to expand...

Good luck with your treatments -- I hope they're effective. Like Katie, I'm surprised they only said 6 months. I was originally told 18 to 24 months. They wanted to continue treatments for 12 months after I switched to negative AFB smears. I have read comments from others online who are on shorter treatment plans, so it probably varies based on your situation.

I'm also on Amikacin and Cefoxitin, although I've switched between inhaled and IV Amikacin. I'm currently on the IV form. I'm on a bunch of oral meds as well.
 
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MichaelL

New member
I saw my NTM specialist yesterday. He said that the FDA did not approve Arikace because they didn't think the trials were sufficient. He expects Health Canada to reach the same conclusion. He mentioned that they're starting another round of trials -- I think he said later this year for the US and next year for Canada. I'm not sure about the UK.

I don't know much else, but I thought I'd pass this along.
 
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TreasureGoddess

Member
Thanks to all for the good detailed info on the treatment regimens and also side effects you've experienced. My son had his first culture for mycobacterium abscessus and we go back in another 4 weeks for another sputum culture and PFT's and to discuss treatment options. I always feel better knowing what others have had success with, what things to ask about (antinausea meds) so we're not learning everything the hard way.
 
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Hail2Pitt

Guest
Here's a question for all of you fellow NTMers -

When you are on antibiotic treatment for M. Abscessus (or other NTMs), would you say you cough out more, less, or the same amount of mucus as when you're not on drugs?

I don't think I paid that much attention when on antibiotics previously (or maybe the difference just wasn't noticeable), but this time around I seem to be coughing out more stuff than I was during my drug holiday. I've been on drugs for 3 months now, and I know I see a difference. I would think that I should cough out less, but I can't imagine that the M. Abscessus is progressing while I'm on all of these antibiotics, so perhaps the drugs are making it a bit easier to get stuff out. Just curious...
 
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MichaelL

New member
I haven't noticed a difference between coughing up more or less when I'm on my NTM meds, although I have been on them for a long time now. I have had M. abscessus progress while I was on treatments, although they had made some changes to my meds leading up to the flare up.

It seems like it would be a good thing to clear more out of your lungs. Are your lungs more congested, or just more sputum is coming up when you do lung clearance?

I hope your treatments are going well.
 
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chrissie9000

New member
Hi. Can anyone help. My son is on the Brompton Hospital regime treating M. Absessus and has started to perspire profusely. It starts about 2 hours after taking his meds. The docs say this is a side effect of Clarithromycin. Any views and how to rectify it. He is nearly 18 and transitioning to adult clinic. Thank you. Chrissie
 
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kmhbeauty

New member
Can someone tell me what is the difference between MAC and mycobacterium abscessus or is it the same thing? Im confused. I know I have MAC
 
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donin

New member
Chrissie - my son has had NTM for 8 years. Night sweats are the warning sign that he is developing an active infection. Generally when he has been on the meds and it's under better control the sweats stop. Terrible chills in advance of fever are also an indication that it's coming at him hard.

KmhBeauty - I believe that MAC is for the version called mycobacterium avium complex. I think it's a different strain from m. abscessus but the same family.

 
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chrissie9000

New member
Hi Donna. Thanks for coming back to me. His perspiration is under the arms when he is relatively well, not the fever sweats seen mainly on the head. It is cold at present and he will sweat through 2 shirts and as jacket even with anti perspirant. He is embarrassed to raise his hand in class due to the wet patches. Not fun for the child and we need help. Docs just say he must live with it cannot stop the Clarithromycin.
 
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ladybird

New member
Orange oil is highly effective against M. Avium Complex. http://www.ncbi.nlm.nih.gov/pubmed/22560037. I put a drop in my hypertonic saline every day, and have been doing so since December 8. Will post the results of my next culture. I am sure there may be other essential oils that may work as well. At worst orange oil is harmless, at best it may get rid of these superbugs.

I am also using cassia oil against pseudomonas.
 
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Hail2Pitt

Guest
Chrissie - when I first started my treatment several years ago, I got what seems like a very mild version of what your son is experiencing (I think it was due to cefoxitin). I'd never really perspired under my arms before, and at some point realized that it was happening every day, even what I wasn't particularly hot. Though, just switching from deodorant to a regular antiperspirant was enough for me. Have you looked into prescription antiperspirants? Perhaps your doctor or a dermatologist could prescribe one to try? Also, if it is indeed the clarithromycin, couldn't he instead take azithromycin? While the two drugs are different, they seem to be almost interchangeable in Abscessus treatment. I've actually never taken clarithromycin - I've only taken azithromycin.

KmhBeauty - donin is correct. Mycobacterium avium complex (MAC) and Mycobacterium abscessus are two different types of Nontuberculous Mycobacteria. There are many other types as well - M. intracellulare M. kansasii, M. fortuitum, et al. I think MAC is the most common, and abscessus is the toughest to treat.
 
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MichaelL

New member
Chrissie -- I didn't think about it until I saw Hail2Pitt's comments above, but I have similar experiences. At night, I usually can't sleep under a quilt or blanket because I get too hot. I'm not really sure which med causes this, but I suspect it's the Cefoxitin.

I also have always taken Azithromycin rather than Clarithromycin. For me, it's because the Clarithromycin has more drug interaction issues. I assume your doctor is aware of all the meds your son is on so this shouldn't be an issue for him.

Good luck -- abscessus treatment is a long process.
 
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MomtoprincesswithCF

Guest
Hello all,

My daughter (12) cultured M.abcesses 18months ago. For a few years prior her lung function would decline they would do Iv meds. Her lung function would go back to normal for a year then do the same thing. Then her sputum grew abcesses. Her lung function was always over 100. It dropped to the 80s. We went into this process with lil info, they told us we would start with 2 months of IVs then start on inhaled amikacin, zyvox, chlorythromycin, and minocycline for 12 months. So we agreed. Her lung function is back to normal and she feels great. This has been a long 18months and we have been waiting for a negative. She is stain negative almost every time but has never cultured negative. The doctors say now they will not take
Her off this regimen until they get culture negative?? The more research I do now and what I read on here, she may never culture negative. So here's my question: we started this with an end in sight...now 18months out with still a positive culture..... There seems to be no end in sight. Which, my daughter at her age is over this regimen. What should we do....... Keep doing theses meds until whenever, or is there ever a possibility to just get off of them...... Is that a bad idea??? I have read on here that people keep saying their abcesses keeps flaring back up??? Is that what could happen if she stops? If she does stop for a break would the abcesses then be resistant to the meds she was taking??? I would like to here anyone's input as to what they would do.... Thank you so much!
 
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semnle34

New member
Hey MichaelL,

Sorry its been so long since I've been on here. I am glad to see my post is continuing and people in the CF community are talking about this. Since we last spoke my Infectious disease doctor said minimum 6 months IV's now he's extending it to minimum year if not longer. I am still on the IV Amikacin and Cefoxitin along with the oral Biaxin. They are the only meds that I am sensitive to at this point. The night sweats thank god have stopped after 4 months of treatment now. I am starting to feel better. I am pushing through this but man week after week I get sick of it. I am hoping now with so many CF'ers testing positive with the M. Abcessus more research will be done to find something that can eradicate this bug. It is the only thing that continues to bring me down. So far Ive been able to control everything fairly well. M. Abscessus is no joke. We'll see what the doctor says tomorrow. Thank you for sharing all your personal experience with this as well. I know you and I are in the same boat when it comes to building up resistance to everything out there.
 
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Hail2Pitt

Guest
It definitely is a struggle at times battling M. Abscessus. But, there are many reasons to remain optimistic, and here are a few:

1. I really think ARIKAYCE is going to eventually be approved and will help us. My Abscessus is resistant to almost everything, and at the point I started the clinical trial, had been on drugs for a year with no improvement. After 24 weeks on ARIKAYCE (I was one of the lucky ones who had drug for the whole trial), I'd shown marked improvement in my PFTs as well as a significant decrease in the amount of bacteria in my lungs. I believe I was on the path to actually becoming culture negative if I could have stayed on it for longer.

2. You may have seen one of the articles about teixobactin going around. Here is one - http://www.bbc.co.uk/news/health-30657486. While it's still 2-3 years away from human trials, this sounds pretty promising!

3. We all know that Abscessus is difficult to impossible to clear for most of us. At my last clinic appointment, my docs told me that they'd talked with other docs at the CF conference who now have patients on Ivacaftor - they told me there were cases where Abscessus infections that previously couldn't be cleared were actually cleared once Ivacaftor was started. I have no idea how many cases there were, but I'd been wondering about this very thing. It seems that we're close to F508del homozygous patients being able to take the Ivacaftor/Lumacaftor combo, and folks with class 4 and 5 mutations being able to take Ivacaftor alone. This would cover a lot of us, and I wonder if some of us with Abscessus might greatly benefit.
 
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MichaelL

New member
MomtoprincesswithCF -- I was told that I should not expect to ever be culture negative. It does happen, but I think it's rare. That said, I've always been told that if I ever get to negative smears, they will continue on the treatments for a full twelve months before stopping. I'm not sure from your post how long your daughter's smears have been negative, but I think the target is usually six to twelve months. I don't know how treatments and goals differ for children, but I would ask some pointed questions about what the goal is.

semnie34 -- I'm glad this post has stayed alive as well. It's good to hear you're feeling better -- that's a great first step. Hopefully, you can flip over to negative smears if you haven't already. It is very frustrating, but I have heard of people who were able to live a pretty normal life after getting through the 18 to 24 months of treatment. One person in my clinic was able to go for ten years before treating abscessus again.

Hail2Pitt -- my NTM specialist said they would be doing more studies on Arikace, so there might be opportunities to get into studies and use it again. This also means a longer time until it's available. My doctor says I can't participate in the studies because it's too risky for me to get the placebo. I have a class V mutation, so I have some more waiting to do.

Someone set up a Facebook group for CF and NTMs. Very few people post, but here's the link if anyone's interested: https://www.facebook.com/groups/277605499636/
 
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