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Abscessus - not coping well with treatment

Posted by pollyflinders @pollyflinders, Jul 23, 2025

I’m currently being treated for m Abscessus- 4 weeks on iv in hospital and now oral meds and inhaled Amikacin home. All started well but now have awful nausea. Finding everything so difficult-especially eating! Any suggestions?

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janetann | @janetannfaust | Aug 31, 2025
In reply to @rizzinator "I have been n both IV Amikacin and Imipenem since July 24th as well as Clofazimine...." + (show)
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I have been n both IV Amikacin and Imipenem since July 24th as well as Clofazimine. I have also started inhaled Arikayce. Both IV's take one hour each through my PICC line. Is your length of time on IV because of how much you have to take? My Imipenem is 1g every 12 hours and Amikacin 500 mg one a day. Am I better, not yet but hoping. Can't imagine anything being worse than this. Prayers for you!

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My Amikacin is 1,500 mg so that must be why it is 4 hours. My Dr did call on Friday to let me know he is starting process for an alternative drug in oral form for Amikacin. Hope it happens soon. Thanks & Prayers for you.

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sarahlynn1960 | @sarahlynn1960 | Aug 31, 2025
In reply to @janetannfaust "At home my Amikacin IV is taking 4 hours. Has anyone had Amikacin by IV at..." + (show)
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At home my Amikacin IV is taking 4 hours. Has anyone had Amikacin by IV at home? If so, was yours 4 hours? The 4 hours is emotionally draining and then followed by the Imipenem IV that is 2 hours. Please share your experience. My Dr did call me and he is working to get an oral drug to replace the Amikacin. If I had all oral drugs, I would be more positive going forward. Please share if you have had trouble getting the oral drugs instead of IV. Thank you.

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When I was taking Amikacin I had a bulb-like thing that I hooked up to my pic line 3 times a week, and put in my pocket. It would infuse from the bulb, and I could walk around and do things. It may have taken 30 mins or so, but not 4 hrs. You may be on a different dosage that doesn’t have the bulb option, but maybe later on in your treatment this would be an option for you.

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janetann | @janetannfaust | Sep 1, 2025

Thank you for information. Have a great day!

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smtdoc | @smtdoc | 6 days ago

I finished one month of Amikacin plus Nuzyra and have felt much better. Now that the Amikacin is done, Imipinem is to be added to oral Nuzyra. The next step will likely be Clofaximine when I return to NJH in 2 weeks. Not anywhere near "fine" but I am more active, less isolated and, as I feel better, my thinking is more clear and I have resumed some on line work I had given up on for a while!

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