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???

@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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I am so sorry to hear how widespread the infection is and how much you have to cope with. My thoughts are with you💕

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@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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@hydrang3a I am sorry that you feel so bad. What symptoms are you having? (like just having mac isn't enough) Maybe I can help with some suggestions to combat some of the discomfort. Big hug going out to you.

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@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 I want to answer this question more clearly and quote my doctor at Mayo. He said "patients with bronchiectasis will always be at risk for mac and pseudomonas because the lungs are damaged. A patient with bronchiectasis should be on a monthly maintenance antibiotic for life. For example: I was treated for three yrs taking two antibiotics on alternating months. I took these for only 10 days each month. That got rid of my mac.In fact, it was gone within the first year I started that regime. Then, in the forth year, I came down with pseudomonas, so my one drug got changed to a 28 day-every other month of tobramycin. The pseudo was gone after 30 days. I stayed on the those antibiotics for three more years to the present. I am guessing you have bronchiectasis, do you not? My point is, mac usually returns when you do have bronchiectasis, so you need to be on preventative meds. The BIG 3 cannot be taken past 18 months, so they cannot be your preventative meds. I was on doxycycline and ciprofloxacin. Other's med choice would depend on their suseptibility test.

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@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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@hydrang3a If it is at all possible, I'd get a second opinion from the Mayo Clinic about the abscess. NJH always wants to do surgery, and surgery doesn't guarantee it won't come back, because sometimes it does. Be sure to ask what would happen if it weren't removed.

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@windwalker

@hydrang3a If it is at all possible, I'd get a second opinion from the Mayo Clinic about the abscess. NJH always wants to do surgery, and surgery doesn't guarantee it won't come back, because sometimes it does. Be sure to ask what would happen if it weren't removed.

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Windwalker….thank you for your thoughtful replies. I am seiously considering your suggestion to get a second opinion regarding my abscess. However I have great confidence in my NJH doctor and with her knowledge and experience with this disease.

I was very sick this summer…bed ridden with infection….received daily IV of Invanze and the infection improved….. later received 8 weeks of amikacin IV…experienced vertigo and other troubling side effects….switched to oral big 3 in July once MAC was identified….strength returned and much improved….CT scan shows less overall infection but the abscess has grown slightly …..as I understand it….abscesses are the most resistant to antibiotics….and I am hitting them with a lot of big guns including Arikayce daily.

I’m not in favor of repeating CT scans too early as I have already received a ton of radiation but I am very curious to know if the abcesss has shrunk since my last scan in September. Ive been advised to wait until March for the next.

I fluxuate feeling OK to having a rawness in my chest…I find it difficult to speak at times….from deep in my diaphragm…. exhausting and frustrating…small talk a giant waste of effort….difficult to extend a verbal hand of friendship ….and wary of a physical hand of friendship too as I have to be concerned about germs….my hand sanitizer is a lonely companion!

I am extremely emotional…anyone else?

I do have Bronchiectasis……and am subject to reinfection but I have not heard that I will need to be on antibiotics of some sort forever. I understand the concept but I think we all should be concerned about the hidden side effects of all antibiotics. Current medical thinking is that antibiotics weaken us, destroy our immune system and set us up for repeated infections which are smarter and able to defy the varying forms of antibiotics.

Functional medicine is replacing the overpresciption of antibiotics. The medical profession first thought they’d prescribe more than one antibiotic so the infection wouldnt get resistant to one …..now they are learning infections can be super intelligent and build up resistance to 3 or 4 at a time or in sequence.

Doctors are now focusing on treating the patient instead of the disease once the infection is at bay.

The aids epidemic was wiped out by antibiotics similar to what we are on. However as my infectious disease doctor told me the reason you don’t hear about HIV deaths so much anymore is not due to continued use of antibiotics but because of stick diet and improved lifestyle.

Antibiotics have their place but need to be used only sparingly and for brief periods…..to be healthy and to keep infection away I have been told that we must be vigilant avoiding sick people, preservatives, and practice meditation, deep sleep, proper exercise, excellent nutrition, and avoid stress.

I’m not there yet…and since I still am infected will continue my strong course of antibiotics and lung clearance….and I will do anything to get rid of this including surgery if antibiotics don’t deminisn the growth of my absecess.

I so enjoyed your comments….sounds like you have a lot of experience with this disease. Please keep responding …..all of this information and different viewpoints helps so muoh.

Thank you!

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@hydrangea Yes- extreme emotionality is real with this disease. Some of us go through the many stages of grief, and then do it all over again depending on how devastating this disease has been to our normal way of living. It has been written we often look at our life as “before MAC” and “after MAC.” I recently missed my daughter’s wedding because of this disease. I’m still not over that! Try not to let it define you! You are not alone! (Irene5)

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@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 Did you try the medication, Arikares Inhaler, and what was the outcome?

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@spencersok

@summer33 Did you try the medication, Arikares Inhaler, and what was the outcome?

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I have not tried it yet. I got a second opinion and was told to get more x rays of my lungs and sputam test
I do not like the idea of taking something that could cause blindness and loose of hearing
I will know more after the test. I do not have a bad cough or breathing bad unless I do a lot of heavy walking etc.
I will post as soon as I know what I am doing.
The big 3 seems to be what are making me feel so bad
I sometimes wonder how I would be if I stop all treatment.

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@debminuet I have been taking the big 3 daily since July. I’m also taking Arikayce daily. They are all a worry. But……so is the infection. My infectious disease doctor told me that if you were to give these drugs to a well person they would be very sick……so my question to him was…..if we are getting well and feel bad…..shouldn’t we stop the drugs because we are more well than sick and the drugs are making us feel lousy. His answer to me was no…..the biggest mistake is getting off the drugs too early…..MAC must be completely irradiated before the drugs are stopped….that’s why they have us on them 6 months after we have a negative sputum culture.

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@hydrang3a

@debminuet I have been taking the big 3 daily since July. I’m also taking Arikayce daily. They are all a worry. But……so is the infection. My infectious disease doctor told me that if you were to give these drugs to a well person they would be very sick……so my question to him was…..if we are getting well and feel bad…..shouldn’t we stop the drugs because we are more well than sick and the drugs are making us feel lousy. His answer to me was no…..the biggest mistake is getting off the drugs too early…..MAC must be completely irradiated before the drugs are stopped….that’s why they have us on them 6 months after we have a negative sputum culture.

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How do you feel.while on the Arikares ? Has it helped ?

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@summer33….it will take many months to judge the efficacy of Arikayce. I’m not feeling good but that could be the big 3 I am taking daily too or the bronchiectusis or MAC. How are U?

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I think my tired body comes from the Big 3. I am so mixed up about going on the Arikayce. My ears already ring all the time and my site is beginning to show signs. My doctor is trying to get me to start the Akrikayce as well as the druggist at his office. I talked with my pulmonary doctor and he thinks I should get a lung X-ray and sputum test before I decide. These side effects are really scarey . We have ALOT of snow and so far the doctor office is closed, so I can’t get in to get the xrays etc. I have always been very active and this has been so hard on me as well as my husband. I have tried to not complain but my weak eyes tell on me along with my being so tired. Thanks for letting me know “someone “ that has started on the Arikayce. How long have you been on this. I know taking the big 3 and the inhaler has got to be really hard and that is what concerns me. Keep me posted and I will let you know what I decide.

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