Mycobacterium meds reassurance needed..

[Rachie]

Hi, I'm hoping there may be some words of wisdom for anyone on the long term antibiotics for MAB. I have just finished the 2 week IV's of Tigercycline, Amikacin, meropenum and oral Clarithromycin. I tolerated them fine thanks to the antisicknesses Aprepitant, Ondansetron and Domperidone. During the second week though i started feel anxious and did not sleep (eventually they prescribed zopiclone for sleeping, which was amazing but I do not want to depend on this). I have not really experienced this before, I'm no sure if it in my head because of the sudden new regime I'm faced with for the next 18mths or brought on by the medications (for example I know the anti sickness work on seretonin and dopamine). I am not on these now though.

I'm home now on the new orals Moxifloxacin, Clarithromycin, Minocycline and nebbed Amikacin.

Does anyone have experience with this?... I know everything about MAB have read all the horror stories and some positive ones but I'd just like to know if I will learn to get used to all these meds and my anxiety will get better. Did others feel overwhelemed? Only been home 2 days.

Thank you for any advice. I am in the UK btw this is how they treat it on 3rd appearance in Culture or smear. Full on eek.
x

Soller Posts: 13Joined: Sat 28 Sep, 2013 15:52

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[MichaelL]

I wouldn't say I've felt anxious, but over the course of treatment I've felt frustrated, discouraged and depressed. I would agree that it's overwhelming to start such a long treatment plan. On the positive side, your regimen (three orals, one inhaled) is manageable relative to what it could be. Many people -- including me -- have been on IVs for a long period of time.

Amikacin has some serious side effects with regards to hearing and balance. The inhaled form is much safer so it's good that you're on it. If you haven't already done so, I would get a hearing test as a baseline and then go for hearing tests periodically (maybe every two to three months?).

I've not taken the three oral meds you're on, so I can't speak to their side effects. I would ask your doctor or pharmacist about the major side effects. I've found looking at side effects on the internet not very helpful. They often seem to list every possible side effect for every single drug. Abscessus treatments are so long, that we're often on drugs longer than recommended. This can lead to more side effects and sometimes side effects that are not as well known. It's important to let your doctors know of anything unexpected. They may have to change your drug combinations if any of the side effects get too serious. That's happened several times for me.

I know we already have so many medical-related things to do related to our CF, so additional things make it hard to keep track of everything and to find time for it all. However, I think you'll get used to the new/additional regimen pretty quickly. If you have problems remembering to take the meds, set up reminders on your phone or some other way to keep on top of your treatments.

My NTM specialist encouraged me to track my medical data myself, which I've found to be helpful. I keep a spreadsheet that includes my sputum results (AFB smears, abscessus cultures, pseudomonas, steno, etc.) as well as my lung function results. This helps me to look back and see progress and where I've had better and worse times. It's not for everyone, but I like to track it.

Good luck as you get settled in with the new meds. Hopefully, you'll have good results.

 

[Rachie]

Thank you so much Michael. I feel so much better day all since stopping Domperidone (anti sickness) anxiety gone., crazy restlessness gone, weird muscle twitching gone and I slept! I understand it works on your Dopamine levels so perhaps I was having some kind of withdrawal. What's good is it isn't any of the antibiotics doing it as so important to stick to the course.

I also roughly track my data. The hospital sends a full breakdown after each clinic. Currently I have 3 culture positives before treatment and no smear positives but who knows which bit of lung you cough up at the time! God only knows how much this treatment has all cost. Makes me so thankful to our NHS and how hard they all work.

 

[Michael Klein]

Hey Rachie!

So, just to clear things up, when one gives s sputum sample (a good one that is) all bacteria growing in ones lungs will show - this is because mucus encapsulates bacteria therefore when coughing mucus up one is effectively coughing out part of the infection: it's an immune response; so you don't ever have to worry about a mucus sample not being from an infected area. Take everything a day at a time I know it's hard and it's what everyone says (it's such a generic term but it's true) and listen to your body: don't force it to do something if you don't feel well. I wish you the best on the treatment! Hopefully you can get rid of it!

 

[Rachie]

Thanks so much for your support. Have very hoarse voice from amikacin neb now and tight but it's only day 5....

 

[donin]

Rachie and Michael - my 26 year old son has been battling myco for 7 years. He has been on IV amikacin and inhaled. Also IV tygicil and oral clofazamine. He has had periods where the myco practically jumped out of the petrie dish and then three times he didn't culture it at all. Within the same week he cultured it and did not culture it. It has been my understanding that it is possible to give a sputum sample that is negative but that it is still in the lungs (not unlike Rachie's description of a sample from an uninfected lobe). Best wishes.

 

[Michael Klein]

That brings up a very good point Donin, since m.abscessus can transform into a smooth colony e.g. a biofilm (as compared to a rough) when not causing an acute infection, it might actually be possible for it to reside in an organ and the mucus not "get to it" for lack of better terminology. Very, very good point Donin

 

[Michael Klein]

Oh! and Can I send you a private message Donin? I read on one of your responses that your son is now 26? and he's been fighting m.abscessus for 7 years? That would bring him at the time I first contracted it at 19 (i'm 21 now).