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Low energy
Diagnosed with MAC over 18 months ago and was put on the big 3. After 5 months I was taken off riamprin due to having adverse reaction to it. Continued on with 2 antibiotics only to be told I needed to add arikacye . Since being on arikayce I’m more breathless and have zero energy wanting to sleep all the time. I have no ambition to do anything and if I’m honest I’m pretty depressed even though I take a low dose of antidepressant. I have a very supportive husband who works long hours and then comes home and cooks dinner which makes me feel guilty and so the vicious cycle starts again. Anyone else feel like this?
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Hi BLM1007!
Thanks for your response.
I seem to remember that there were some recent studies that may have shown Rafambin as not crucial.
I was just curious.
Thanks for your good wishes and good luck to you!
Frankie@160
Same here, almost the same time line as you. I had severe reaction to Arikayce. I am not tolerating rifampin very well, gives me chest pain and interferes with my BP. Just on two meds daily now. But i am exhausted! My doctors gaslight me and say i shouldnt feel this way. My xrays/ct scans say i am not better but i am not worse. LOL I have a desk job and am ready to quit. I have to do my housework in stages. Cant sleep because of the chest pain. I am asymptomatic the MAI was found by accident. I am absolutely wore out and my family thinks i am just being lazy.
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2 ReactionsI’m in the same boat. It’s been almost 3 years of trying to find a solution. I’m was taken off riamprin due to adverse reactions and put on aricayce which in turn made me depressed and same as you I’m also on an antidepressant. I’m now on the experimental drug clofazamine along with 2 antibiotics and Dr wants me to go back on aricayce. In addition to all the other antibiotics ☹️ I fear for my body and what all these antibiotics are doing to it.
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3 ReactionsI could not tolerate rifampin either I experienced throwing up violently and awful chills. I’m exhausted too and my family doesn’t understand it. I’m on 2 of the big 3 along with clofazamine. An experimental drug. I nebulize every day with albuterol and 7% saline to try and keep the airways open. Good luck to you I completely get it.
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2 Reactions@britchic and all ... Anyone whose doctor says "you shouldn't feel that way" when you are exhausted with NTM/MAC & heavy duty antibiotics needs a doctor who knows Bronchiectasis and MAC. If you are in the US, you can do a search here for "centers of excellence." It is a growing list.
If your family doesn't understand, would they be open to reading any of the excellent available resources? Do a search here for "ABC's of bronchiectasis " to find them. And get the rest you need!
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10 ReactionsCan you reduce your Arikayce to 3 times per week? My local doctor put me on daily Arikayce, 2-3 weeks later I went to NJH and due to my side effects, they right away suggested I go on inhaled Amakacin (IV) and 3 times per week vs daily. They also cut my Linezolid in half after looking at how my metabolism metabolizes the anti-biotic. I highly recommend NJH and most insurance companies pay. Fortunately, when they learned my MABC count and evaluated all my tests, CTs atc. They took me off all the antibiotics, so I was on for only 3 weeks but never want to go on Arikayce again.
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2 Reactionssorry, I have a bad habit of not looking at posting date....
May I tell your family you are so not lazy!! I was the ever ready bunny till I got MAC and BE. They can look MAC up online. It even talks about the exhaustion and how family members need to understand it is difficult to do so many things like housework and meal prep. I was the holiday house for everything. I still provide the house, but everyone brings a dish now and cleans up for me.
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3 ReactionsI don't always look at posting date either , sorry about that. I am so with you all with NTM and Bronchietasis.. The exhaustion is something people don't understand, especially the doctors. I am not on any MAC meds right now as I have been that route with very little improvement and bad side effects in 2020. Housework, meal prep , errands I cannot hardly do any more. Working full time yet takes absolutely all my energy until I turn 64 when I can then resign my position and be comfortable enough to pay for my own health insurance , but I rely on my husband for all of the day to day housekeeping tasks right now. So sad so many of us are in this position, but I have hope. Mayo Clinic Connect is a life line for many of us to share our experiences and gain tidbits of valuable knowledge.
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2 ReactionsYes indeed! Hope springs eternal! Glad you will be able to get to retirement but so sorry you are dealing with this. I could hardly put one foot in front of the other back in 2013 and 2014 so I knew something was wrong. Hence I retired at 64 instead of 65 which was interesting insurance wise with children. The Mayo connect family has been a godsend to so many people! Wishing you well. Irene5