1. < MAC & Bronchiectasis

Daily dosage of Rifampin Ethanbutol and Azithromycin

Posted by debminuet @debminuet, Dec 4, 2018

Hi there everyon
I was treated for MAC two years ago 3 x weekly, Ethambutol/Rifampin/Azithromycin Ive recently had scan with buds showing and have symptoms and am now prescribed to take this every day and Im scared. I didnt have side effects last time but taking this every day is scary. Does anyone have any experience of daily meds as such???

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 7, 2018
In reply to @hydrang3a "To@marilynk....I started Arikayce on Nov 12 and have been on the Big 3 for six months...." + (show)
@hydrang3a

To@marilynk....I started Arikayce on Nov 12 and have been on the Big 3 for six months. I’ve had a sore throat and have had emotional ups and downs. I too am very concerned about the serious side effects. Being on any kind of medication for a long period of time is tough on us....but so is this disease. I am vigilant following all the instructions and getting periodic eye and ear and blood check ups. The troubling thing I find is how little doctors know about this drug....and their lack of experience with patients taking it. Still I plan to continue with it unless side effects become overwhelming. Id like to hear from everyone taking Arikayce...we can be a great help to each other!

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@hydrang3a and @marilynk I have a question for you both. Just how infected are you that you need to be on the Big 3?

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3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 7, 2018
In reply to @marilynk "I was on the 3 a few years ago and did not have a problem but..." + (show)
@marilynk

I was on the 3 a few years ago and did not have a problem but wonder about now, 5 years later. He wants me to go on them again plus the Arikares. At this stage I’m soon to be 83 and I’m healthy and lots of energy - do I want to give that up??

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@marilynk, Hi there. If you have lots of energy, it doesn't sound like you have an active infection. Why does your dr want to put you on the Big 3 again? By the way, I am about to turn 60 and am a envious that you have a lot of energy still. Lack of energy is a biggy for me, and I don't have an active infection at this time!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 7, 2018
In reply to @hydrang3a "@marilynk and everyone....there seems to be a pattern here of so many of us needing to..." + (show)
@hydrang3a

@marilynk and everyone....there seems to be a pattern here of so many of us needing to repeat the multi month regimin of the big 3. Has anyone also used alternative medicine? Acupuncture and Chinese herbs along with a diet void of preservatives, sugar, and flour..... rich in rest, meditation and exercise? CBD oil? Even western medicine is begining to lean more towards functional medicine to our benefit. We need to treat more than our infection....which is what the big 3 target...we need to treat our entire bodies with more care and respect! The meds have their place, and although I am concerned about the adverse effects on our bodies of taking long term antibiotics I will continues us to use them until one of my blood draws, eye checks, or hearing tests show problems. I will also incorporate CBD oil, acupuncture, and herbal remedies into my healthy diet, meditation and rest routines. Yoga is also of benefit for breathing and relaxation. For all of us this is incredibly time and mind consuming.....we need to embrace beauty and do all we can to heal. I’m thankful we have each other and for me I’ve found that leaning on God and looking to him for healing has brought me peace and courage to continue this struggle. I wish you all good health!

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@hydrang3a Yes, I have tried all of the above in the eastern medicine and alternative medicine. I have tried every root, powder, tincture, accupunture, yoga, etc. These are good for 'complimentary medicine' to be used in conjunction with western medicine. For people who are immumo-compromised like many of us are with mac, this dreadful bug can only be fought with good antibiotics used long term. Some people do have such a minor case of it that they can do just alternative treatment. Some people get mac and it goes away on its own. Then again, some people get mac and other nasty bugs and it becomes fatal. Mac effects people differently, and should not have a 'one size fits all' treatment plan. It really needs to be individualized.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 7, 2018
In reply to @prelle1 "I took all three every day and I was ok . That was 8 years ago..." + (show)
@prelle1

I took all three every day and I was ok . That was 8 years ago and now I have such bad fatigue that I am thinking of restarting that regime again . I know it is scary but I am hind of like visiting nog like an invalid noe and felt much better on the meds.

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@prelle1 I am on maintenance antibiotics that are not the Big 3. This is to keep me from becoming infected again. My doctor's theory is to save the "big guns" for later should you get reinfected later. You don't want to risk becoming resistant to the really good stuff early and not have a back-up plan for up the road when mac attacks again.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 7, 2018
In reply to @summer33 "I was on every day, switched to 3x a week, Sunday’s off. Now I am back..." + (show)
@summer33

I was on every day, switched to 3x a week, Sunday’s off. Now I am back on everyday. I found that eating toast for breakfast and no dairy food helps to not have indigestion so bad. The indigestion made my throat feel on fire really bad. So far I have had a good day, seeing my doctor later about a new drug calledArikares inhaler. Has anyone else tried this medication ? At first Was not sure if I would change , but the druggist called and said it was not the bad side effects I had understood it had. I will know more after I see my Doctor today. I pray for all of us as I go through this journey with you.

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@summer33 Many of our mac drug treatments are becoming the inhaled variety and more are coming down the pike. They are supposed to be better for you in that they specifically target your lungs instead of the pill form that affects your whole body and can stress other organs. Please keep us posted on how your inhalable med works out for you.

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1 reply
hydrang3a | @hydrang3a | Dec 8, 2018
In reply to @windwalker "@hydrang3a and @marilynk I have a question for you both. Just how infected are you that..." + (show)
@windwalker

@hydrang3a and @marilynk I have a question for you both. Just how infected are you that you need to be on the Big 3?

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@windwalker. ....to answer your question “how infected are you.?”.....In addition to repeated CT scans showing widespread infection, monthly positive sputum cultures testing positive for MAC, I have an abscess cavity in one lung my doctor at National Jewish hopes will heal with the increased daily dosages of the big 3 daily, lung clearance twice daily with vibrating vest and saline nebulizing, plus the daily application of Arikayce. I meet with a surgeon in March if the cavity has not healed to set up an appointment to surgical remove the abscess. I’m not sure if its the meds or the disease but I feel awful.

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4 replies
dmarks | @dmarks | Dec 8, 2018

There is research brewing that indicates that three times per week may be as effective as daily. You have to do what you feel you can do.

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dmarks | @dmarks | Dec 8, 2018
In reply to @marilynk "I just received my Arikares kit and after reading about it not sure I want to..." + (show)
@marilynk

I just received my Arikares kit and after reading about it not sure I want to start. I’m on the 3 meds daily - think I want to stay with them. Arikares side effects frighten me as I have a hearing loss, macular in one eye and retinopathy in the other. Has anyone been on it?

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I have and I did have ringing in my ears and some hearing loss. You have to weigh out the side effect possibility to how the drug can help. this drug along with the others helped get MAC negative for a year.....it is worth a try

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marilynk | @marilynk | Dec 8, 2018

Yes, I took them for 12 months and no problems - that was in 2004. Mac is back now and I’ll be going on same 3 meds plus Arikares. Wondering why they don’t prescribe the nebulizer alone. They want me on all 4 for 12 to 18 months...

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marilynk | @marilynk | Dec 8, 2018
In reply to @hydrang3a "@windwalker. ....to answer your question “how infected are you.?”.....In addition to repeated CT scans showing widespread..." + (show)
@hydrang3a

@windwalker. ....to answer your question “how infected are you.?”.....In addition to repeated CT scans showing widespread infection, monthly positive sputum cultures testing positive for MAC, I have an abscess cavity in one lung my doctor at National Jewish hopes will heal with the increased daily dosages of the big 3 daily, lung clearance twice daily with vibrating vest and saline nebulizing, plus the daily application of Arikayce. I meet with a surgeon in March if the cavity has not healed to set up an appointment to surgical remove the abscess. I’m not sure if its the meds or the disease but I feel awful.

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Did you feel awful before you started the meds?

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