Antibiotics for M. Abscessus

Posted by cattleya @cattleya, Nov 3 10:20am

Hi everyone. Just want to say I'm getting so much out of these discussions and feel for everyone who is struggling! I'm wondering if anyone has been on IV Amikacin, IV Imipenem, oral Linezolid (or Tedizolid) and oral Omadacycline for an M. Abscessus infection. I would appreciate hearing about your experiences and outcomes.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

There are people on the board who’ve had M. abscessus. I’m bumping it up since everyone doesn’t check every day. I’ll also try to find a thread with the discussions.

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Here’s a thread on linezolid.
https://connect.mayoclinic.org/discussion/has-anyone-tried-zyvox-linezolid/
I used the search function in this group to find it.
Edit to add..
I just saw your last thread and see this is for specific experiences with those meds.

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I took IV Imipenem for a whole day! I was also prescribed two oral meds at that time. Got one down and was too nauseous to get the third one down. I had severe nausea, vomiting, coughing, sneezing with uncontrollable shaking of my arms and legs during my second dose of Imipenem. All at the same time! I finally was able to lie down and I shook myself to sleep for 3 hours,
My ID doctor discontinued all my meds. Lots of money down the drain!
Amikacin iv was his next choice with two oral meds. It wasn’t a feasible plan because he said I had to go to the hospital twice a day for infusions. I had my PICC line pulled and never went back.
That was January and I’ve been to two different pulmonologist since then. I am currently doing the watchful waiting with ACTs. My last CT was greatly improved to the point of almost resolved.

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@pacathy

There are people on the board who’ve had M. abscessus. I’m bumping it up since everyone doesn’t check every day. I’ll also try to find a thread with the discussions.

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Thank you so much for your replies. Very helpful! Could you explain to me what you meant by using the search engine on this site? Also what "people on the board" means. I guess I'm really trying to find out if I can avoid the antibiotic treatment or if it's inevitable at some point. I am so sensitive to medications! Can't tolerate most antibiotics without neurological side effects (shaking, twitching, loss of balance). I also get itchy and often have to take allergy meds along with the antibiotic. I just don't think I would do well. It sounds like people have tried and given up. I'm beginning to wonder if anybody has ever completed the antibiotics successfully!

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@bamaqueen

I took IV Imipenem for a whole day! I was also prescribed two oral meds at that time. Got one down and was too nauseous to get the third one down. I had severe nausea, vomiting, coughing, sneezing with uncontrollable shaking of my arms and legs during my second dose of Imipenem. All at the same time! I finally was able to lie down and I shook myself to sleep for 3 hours,
My ID doctor discontinued all my meds. Lots of money down the drain!
Amikacin iv was his next choice with two oral meds. It wasn’t a feasible plan because he said I had to go to the hospital twice a day for infusions. I had my PICC line pulled and never went back.
That was January and I’ve been to two different pulmonologist since then. I am currently doing the watchful waiting with ACTs. My last CT was greatly improved to the point of almost resolved.

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That sounds like an awful experience. I'm glad to hear that you're doing better. I have great trepidation about trying these medications.

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@pacathy

Here’s a thread on linezolid.
https://connect.mayoclinic.org/discussion/has-anyone-tried-zyvox-linezolid/
I used the search function in this group to find it.
Edit to add..
I just saw your last thread and see this is for specific experiences with those meds.

Jump to this post

Oh, I see what you mean by using the search function. Sorry, I'm just getting used to using this site. Sometimes find the threads hard to follow. But I just did a search on antibiotics for M. Abscessus and there's a lot there. Thanks for pointing me in the right direction!

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@cattleya

That sounds like an awful experience. I'm glad to hear that you're doing better. I have great trepidation about trying these medications.

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Everyone reacts or hopefully, doesn’t react to different meds. I tend to not tolerate too many. There’s only one way to find out. Best of luck.

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@cattleya

Oh, I see what you mean by using the search function. Sorry, I'm just getting used to using this site. Sometimes find the threads hard to follow. But I just did a search on antibiotics for M. Abscessus and there's a lot there. Thanks for pointing me in the right direction!

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I’m glad you found it. I had another appt and didn’t have much time. You are not the only one who gets confused. I still sometimes forget to look at initial date of when the threads started.
By people “on the board” I meant people who post here.
I think I’ve seen guidelines for initiating treatment or links to videos. If someone else doesn’t post it, I’ll try to find it tonight or tomorrow. I have bronchiectasis, but no NTM so haven’t had to deal with decisions to treat.

I found this quicker than expected.
https://www.idsociety.org/practice-guideline/nontuberculous-mycobacterial-ntm-diseases/#null
Under recommendations, there’s info on decision to treat and the guidelines. There could be newer info from Jewish or another institution, but this will get you started. I’m so sorry you have to deal with this.

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@pacathy

I’m glad you found it. I had another appt and didn’t have much time. You are not the only one who gets confused. I still sometimes forget to look at initial date of when the threads started.
By people “on the board” I meant people who post here.
I think I’ve seen guidelines for initiating treatment or links to videos. If someone else doesn’t post it, I’ll try to find it tonight or tomorrow. I have bronchiectasis, but no NTM so haven’t had to deal with decisions to treat.

I found this quicker than expected.
https://www.idsociety.org/practice-guideline/nontuberculous-mycobacterial-ntm-diseases/#null
Under recommendations, there’s info on decision to treat and the guidelines. There could be newer info from Jewish or another institution, but this will get you started. I’m so sorry you have to deal with this.

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Thanks for this article. You're very kind. Heavy reading but very informative. Will take a while to navigate.

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