Mycobacterium abscessus and ARIKAYCE

Posted by toms1982 @toms1982, Dec 4 11:21am

I was recently diagnosed with mycobacterium abscessus with the erm41 gene. Because of that gene the antibiotics (and other ones) I used when I had MAC 3 years ago will not work on this. I am soo going to be on ARIKAYCE. has anyone been treated with this drug for a similar diagnosis?

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irenea8 | @irenea8 | Dec 7 7:22am

In reply to @laborday24 "Does everyone have to go in hospital for iv fusion" + (show)

Usually they want you to start it in the hospital for a couple of days and then you can continue at home. At least that is what my pulmo does.

toms1982 | @toms1982 | Dec 7 7:58am

I was told I will be in the hospital for 4 - 5 days so they can monitor me and get the dosage right for me.

lilianna | @lilianna | Dec 7 8:53am

In reply to @swang18 "I also have abscessus with erm41 gene, was MAC before. I was on everyday Arikayce for..." + (show)

Good morning - I wonder if you are treated for absessus is it because they showed in your sputum respiratory culture or because you had serious symptoms? I hope your treatment works for you and you can tolerate it this time. My best thoughts for you and stay strong from day to day.

tconz | @tconz | Dec 7 3:16pm

In reply to @reneemc "No I did at home for 2 months Amikacin and Imipenem" + (show)

Did someone come to your house to administer the Amikacin?

toms1982 | @toms1982 | Dec 7 3:33pm

No
I go to the hospital this Monday. I will be in there 4 - 5 days while they administer it in combination with other drugs so they can monitor me.

reneemc | @reneemc | Dec 7 5:29pm

In reply to @tconz "Did someone come to your house to administer the Amikacin?" + (show)

I had PICC line and infused IV antibiotics myself

swang18 | @swang18 | Dec 7 8:21pm

In reply to @lilianna "Good morning - I wonder if you are treated for absessus is it because they showed..." + (show)

The Treatment of NTM is based on the sputum culture and CT if it is stable or progression .

tconz | @tconz | Dec 8 8:03am

In reply to @lilianna "Good morning - I wonder if you are treated for absessus is it because they showed..." + (show)

My Abscessus did not show up in my sputum sample only by Bronchoscopy. My colony count is low and I have no symptoms so they are not treating yet. I still use Levalbuterol, nebulize Sodium Chloride 7% and use vest twice daily.

fdixon63 | @fdixon63 | Dec 8 1:59pm

In reply to @tconz "My Abscessus did not show up in my sputum sample only by Bronchoscopy. My colony count..." + (show)

Hi tconz. I've begun getting abscessus in my sputum. We're waiting on the most recent one to finalize results. My pulmo said if it shows positive for abscessus he will start treatment. No results for MAC or abscessus ever show colony count. I can ask him when I see him in a couple of weeks but wondering how you get that information rather than just positive or negative. Thanks.

tconz | @tconz | Dec 8 2:27pm

My Abscessus did not show up on sputum samples until 2 months after Bronchoscopy. Since I go to NJH they perform very detailed testing and it actually takes 6-8 weeks to get final AFB results for Abscessus, etc. At that time the colony count is on the final report. I don't think many Pulmonologist or ID ask for colony count but it is very important when knowing when and how to treat.