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Arikayce

Posted by pa 111 @pagechapman, Mar 26, 2024

With a long standing history of bronchiectasis. I have now started Arikayce as part of my multi antibiotic treatment of MAC. As a result, my cough is now considerably worse than ever. It’s getting hard to get up every morning and face another day long siege of non stop coughing. Anyone else experiencing similar symptoms.

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cpitts | @cpitts | May 6 10:02am
In reply to @sueinmn "@cpitts I found this in the Chest Journal: "DISCUSSION: M.P is a rare cause of clinical..." + (show)
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@cpitts I found this in the Chest Journal:
"DISCUSSION: M.P is a rare cause of clinical NTM infection, which uses paraffinic hydrocarbons as a source of inorganic carbon rather than methane, which might explain its distinct antibiotic susceptibility patterns. It is notorious for exhibiting resistance to ethambutol and susceptibility in vitro to amikacin, rifabutin, azithromycin, and linezolid [2]. Like M.P, many slow-growing mycobacteria (SGM) species like mycobacterium scrofulaceum demonstrate susceptibility to macrolides, and these agents are now a cornerstone of most SGM regimens as in our case; however, different susceptibility profiles have been noticed in limited literature, which supports susceptibility tests for each isolate to verify the in vivo behavior of drugs and thus aid in the choice of regimen." (https://journal.chestnet.org/article/S0012-3692(23)01921-9/fulltext)

Whay are you resisting Arikayces (inhaled Amikacin) which is one of the drus to which is seems to be susceptible?

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@sueinmn
I just don't like the side effects..they scare me.

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cpitts | @cpitts | May 6 10:03am
In reply to @mokie "@cpitts I have been on Clofazimine for over a year without any problems. I have been..." + (show)
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@cpitts

I have been on Clofazimine for over a year without any problems. I have been told by doctors and read online that it has been shown to be helpful with NTM. It has helped me somewhat, though I have a stubborn case of NTM with bronchiectasis. I don't notice any symptoms for myself with this drug. Don't be afraid of giving it a try. Clofazimine does not bother the stomach like rifampin and rifabutin (I have been on both) in my experience. Best regards to you.
Mokie

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@mokie
Thank you so much for the info. Have you been evaluated at National Jewish?

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Sue, Volunteer Mentor | @sueinmn | May 6 10:58am
In reply to @cpitts "@sueinmn I just don't like the side effects..they scare me." + (show)
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@sueinmn
I just don't like the side effects..they scare me.

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@cpitts Have you tried it, or are you only reacting to what you have read about side effects? Not everyone reacts to meds the same way, so it might be worth a trial?

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cpitts | @cpitts | May 7 2:58pm
In reply to @sueinmn "@cpitts Have you tried it, or are you only reacting to what you have read about..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@cpitts Have you tried it, or are you only reacting to what you have read about side effects? Not everyone reacts to meds the same way, so it might be worth a trial?

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@sueinmn Thank you..I have not. My drs are referring me to National Jewish so I assume I will either start on that if they insist or the Clofazimine

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westcottkm3040 | @westcottkm3040 | May 8 9:21am

I started clofazimine 4 months ago. Aldo on big 3 for a year. The Clofazimine seems to be making a difference.

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paxmundi | @paxmundi | Jul 26 11:49pm
In reply to @formergardener "Maybe those who cannot tolerate the daily Arikayce can tolerate the three times weekly? I do..." + (show)
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Maybe those who cannot tolerate the daily Arikayce can tolerate the three times weekly? I do it three times a week along with Azithromycin and Ethambutol and am doing fine.

I have read that some people experience severe throat soreness, coughing, lung exacerbations, etc.. while on Arikayce. I just had a thought. Secretory IgA is an immunoglobulin that is found lining the gut, lungs, etc… and helps to protect it. Some people have low levels. It can be tested. Again- just putting this out there- colostrum powder supplements are known to increase the IgA levels, among doing a number of other things. I can attest to this because years ago, I had a really thorough GI testing for gut microbes, etc.. I was found to have low IgA levels. Never thought much about it until my pulmonologist, for research purposes, checked all of my immunoglobulin levels. I have been using the colostrum powder every day for a year and a half. I have had absolutely no GI complaints on any of these meds. More importantly, my IgA levels are now at the top of the range.

Mind you, I also take a really good probiotic blend (several), and that may play a part, but most of our immune system is in our gut, and what I have been doing has helped me and enabled me to continue these meds with minimal to no side effects, and I have always had a sensitive system.

Just a thought.

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@formergardener What probiotics do you take? Would love to know.

Thanks!

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formergardener | @formergardener | Jul 27 8:01am
In reply to @paxmundi "@formergardener What probiotics do you take? Would love to know. Thanks!" + (show)
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@formergardener What probiotics do you take? Would love to know.

Thanks!

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@paxmundi , Hello there. In addition to eating a great yogurt, I began using something a pharmacist recommended called Orthobiotics, which includes well tested strands of bacteria. My UT Tyler staff recommended Saccharomyces boulardii, which survives stomach acid and helps to keep bad bacteria down, as well as Culturelle, which is lactobacillus rhamnosus.
Those worked very well. I later added Sporebiotics, which survive passage through the stomach acid but are also not affected by antibiotics. That was a smart decision because I felt more energy, less anxiety, and never had a single issue with stomach or bowels during my treatment time.

I began with six months on Clofazimine, stopped it and was put on 3x/wk azithromycin and ethambutol, and six months later added Arikayce. Culture negative six weeks after adding Arikayce, and stayed on the meds for 18 months plus an extra two months after having left lung linguila removed.

I also took colostrum powder every other day during that time. After going off the meds, I switched over to a 50 billion CFU Jarrow probiotic every other day and just continued eating a good, old fashioned regular yogurt with about 90 billion CFU.

I only do the probiotic every other day from Jarrow now. I have been off of meds since June of 2025. I will say that I really felt the mind- gut connection when I took the Sporebiotics. I could get in the worst nightmarish highway traffic, surrounded by 18 wheelers, and have no anxiety. I also feel that the probiotics and every other day colostrum powder kept those tight junctions in the gut and maybe helped to keep my body responsive to the antibiotics. Now I only do the probiotic capsules a few times a week. If I need an antibiotic for anything, I will increase the probiotic use.

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kasper1 | @kasper1 | Jul 28 7:06am

Made me very sick . I could not walk without being short of breath and lost my voice . I only took it for 4 days . Took almost 3 weeks to feel better after I quit taking it.

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