Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC

Posted by cmi @cmi, Dec 11, 2020

I have just begun my drug therapy for MAC. Question, does anyone have any advice on how to take the cocktail of azithromycin, ethanbutol, & rifampin, and suffer the least discomfort. I am taking my meds at night 4 hrs PO after I go to bed (set alarm clock and wake up to take) 3 days a week. I was very discouraged by pharmacist and ID doctor on how brutal the meds are to the system.

I split mine up. I am also on synthroid so when I wake up, I take it. I wait 2 hours and take my first dose of ethambutol and my only dose of azithomycin. Before I go to bed I take my other dose of ethambutol and rifampin. I have not had gut issues and I've been on for a year. I do have ringing in my ears and it wouldn't matter what time of day I took my drugs for that. I am on 3 times a week too but they are talking about going to daily. If someone has a better regimen I'd like to hear it too. The rifampin was interfering with my synthroid. It seems to be working giving a 2 hour split.

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Thank you for that good tip. BTW…I also have horrible distortion with my hearing….to the point of being painful. They sent me to an ENT who did not agree with me that it may all be related (holistic approach) he tried to convince me it was early onset hearing loss…actually though my Rheumatologist agrees that it is all related (not specifically to the MAC); he sees it as a player in the realm of RA…autoimmune.

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@cmi I think @tinaesims has a good schedule. If you look back at previous posts especially those by Katherine a former mentor, you will find her schedule for taking the meds was a good one as well. I’m sure there are others. Rifampin is the tough one. Wishing you well. irene5

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@cmi

Thank you for that good tip. BTW…I also have horrible distortion with my hearing….to the point of being painful. They sent me to an ENT who did not agree with me that it may all be related (holistic approach) he tried to convince me it was early onset hearing loss…actually though my Rheumatologist agrees that it is all related (not specifically to the MAC); he sees it as a player in the realm of RA…autoimmune.

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I was on the meds for 18 months, and transitioned early on to taking all 3 at bedtime. It was the only way I could tolerate them because the nausea was otherwise debilitating. Please look at some of the other, older discussions on the forum for suggestions on easing any symptoms you may have, with ginger tea or candies, frequent small meals, and probiotics.
Also, please consider seeing an audiologist for a baseline evaluation of your hearing – I saw mine every 3 months (until Covid) to make sure the meds were not accelerating my hearing loss.
Sue

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@cmi Welcome to Mayo Clinic Connect, a place to give and get support. You will notice that I changed your conversation to, "Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC."

I did this so you could connect more quickly with active members of the MAC groups like, @thumperguy @windwalker @heathert @brigby @poodledoc more quickly.

You are looking for ways to better tolerate the medication trio. May I ask what your provider has offered as an alternative to the medication trio?

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I take rifampin on waking, wait one hour, then have breakfast and remaining doses of medication. I have not had any discomfort related to dose timing and prefer this schedule as I don’t have to think about the medication again during the day. Just to say, that although side effects are common, they do not affect everyone.
Good luck with finding a schedule that works for you ( and maybe doesn’t involve disturbing your sleep)

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@erikas

@cmi Welcome to Mayo Clinic Connect, a place to give and get support. You will notice that I changed your conversation to, "Azithromycin, Ethanbutol, & Rifampin Drug Therapy for MAC."

I did this so you could connect more quickly with active members of the MAC groups like, @thumperguy @windwalker @heathert @brigby @poodledoc more quickly.

You are looking for ways to better tolerate the medication trio. May I ask what your provider has offered as an alternative to the medication trio?

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I have an interdisciplinary team of doctors…Pulmonary, ID, Rheumatologist, Ophthalmologist, & ENT, working on my behave, all connected through our health care system. The ID doc is covering the medication page and sees me accordingly. I believe because I am so early on in this…he is waiting to see if I can tolerate this plan. I began with just the two Azithromycin 500 & Ethambutol 1200 …will add the rifampin 600 on Sunday…this cocktail is 3 xweek. No alternatives have been offered yet. Comments made before beginning this protocol were “not everyone takes treatment “… I however met “qualifications “ low BMI and fear of weight loss, plus the persistent chest & back pains. I guess I am still too early on in this. My doctors are a good, compassionate, & professional team and we communicate easily via a healthcare portal. ID will follow me with labs for liver function…pulmonary for PFT. My next hurdle will be (if I tolerate meds) how to produce sputum for cultures…I have never had fever, cough, or sputum production. My MAC was confirmed after the bronchoscopy.

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@cmi

I have an interdisciplinary team of doctors…Pulmonary, ID, Rheumatologist, Ophthalmologist, & ENT, working on my behave, all connected through our health care system. The ID doc is covering the medication page and sees me accordingly. I believe because I am so early on in this…he is waiting to see if I can tolerate this plan. I began with just the two Azithromycin 500 & Ethambutol 1200 …will add the rifampin 600 on Sunday…this cocktail is 3 xweek. No alternatives have been offered yet. Comments made before beginning this protocol were “not everyone takes treatment “… I however met “qualifications “ low BMI and fear of weight loss, plus the persistent chest & back pains. I guess I am still too early on in this. My doctors are a good, compassionate, & professional team and we communicate easily via a healthcare portal. ID will follow me with labs for liver function…pulmonary for PFT. My next hurdle will be (if I tolerate meds) how to produce sputum for cultures…I have never had fever, cough, or sputum production. My MAC was confirmed after the bronchoscopy.

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I am so happy to hear you have a team dealing with this – it is the best approach, especially if they are in communication with one another.
One way to produce sputum, which I needed to use during treatment, was to nebulize with 10% saline solution under supervision of the pulmonology nurse. Man, it was irritating, but I was able to produce enough for a good culture. Near the end, she would also do a little manual percussion on my back to help me along.
Sue

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Good to know…there will be a solution. I appreciate the participants in this forum, both considerate and giving. I don’t feel so alone.

Liked by heathert, cavlover

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@cmi

Good to know…there will be a solution. I appreciate the participants in this forum, both considerate and giving. I don’t feel so alone.

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@cmi Mayo Clinic Connect is a place to give and get support. May I ask what you mean by alone. Do you mean, connecting with others that can relate to what you are going through help you not to feel alone or are you socially isolated?

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@erikas

@cmi Mayo Clinic Connect is a place to give and get support. May I ask what you mean by alone. Do you mean, connecting with others that can relate to what you are going through help you not to feel alone or are you socially isolated?

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I am guessing @erikas that most of us have felt “alone” on this journey at one time or another due to there not being knowledge or understanding or needed support among friends or family. There are even physicians who don’t “get it.” How many of us actually knew what MAC/MAI was prior to being diagnosed? This forum provides that emotional support and validity about this disease for so many not to mention the wealth of knowledge we glean here. I think the pandemic adds stress all around. irene5

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Thank you Erika & Irene. Erika, I am not alone…I have the most adoring and present husband who is participating and supporting me every minute of every day. Two most amazingly gorgeous and dedicated adult daughters who smother me with attention and love …Irene nailed it. MAC the ghost from past centuries…”the consumption…phthisis…tuberculosis…” had gone quiet in this country. Vanished with other bacterial and viral maladies with our evolution in healthcare and lifestyle….pretty much a remnant that still haunts are neighbors in the underdeveloped countries in undocumented numbers. This I know because I have had the blessing of living in Central & South America as a child.

The aloneness is navigating the narration (because I have never had to do it)…in creating the storyline to tell friends & loved ones what I’m now going through, the explanation (that doesn’t exist), the plan (which could fall apart in a minute if I do not tolerate the meds), the prognosis (which is an uncertain outcome), and what I am reading and hearing from all of You….beautifully supportive strangers that have come together. Honestly, this forum scares me…I understand the selfless gift of giving of personal experience, but reading the details of your treatments and setbacks…is depressing me.
Blogs and forums give much information…but do not reveal our life’s character…our nature that can only be formed by our individual life experiences. I am a stranger to all of you…but those that know me in my life…know me as a problem solver, director, dictator, giver, best friend, first there last to leave, show me the facts person, that must live with reality illuminated by the light and positive possibilities. I can deal with a poor outcome, but It will be last with resolution and surrender. I have to act, pronounce and believe in a successful end. I must remain in light and hope; the alternative is my darkness…the kind of darkness each and everyone on this planet has felt and lived at some time during their existence.

So you received more than a quick answer I know…but I have been doubtful about my participation in this forum.
I pray everyone of you find wellness…of body, mind, and soul.

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@cmi

Thank you Erika & Irene. Erika, I am not alone…I have the most adoring and present husband who is participating and supporting me every minute of every day. Two most amazingly gorgeous and dedicated adult daughters who smother me with attention and love …Irene nailed it. MAC the ghost from past centuries…”the consumption…phthisis…tuberculosis…” had gone quiet in this country. Vanished with other bacterial and viral maladies with our evolution in healthcare and lifestyle….pretty much a remnant that still haunts are neighbors in the underdeveloped countries in undocumented numbers. This I know because I have had the blessing of living in Central & South America as a child.

The aloneness is navigating the narration (because I have never had to do it)…in creating the storyline to tell friends & loved ones what I’m now going through, the explanation (that doesn’t exist), the plan (which could fall apart in a minute if I do not tolerate the meds), the prognosis (which is an uncertain outcome), and what I am reading and hearing from all of You….beautifully supportive strangers that have come together. Honestly, this forum scares me…I understand the selfless gift of giving of personal experience, but reading the details of your treatments and setbacks…is depressing me.
Blogs and forums give much information…but do not reveal our life’s character…our nature that can only be formed by our individual life experiences. I am a stranger to all of you…but those that know me in my life…know me as a problem solver, director, dictator, giver, best friend, first there last to leave, show me the facts person, that must live with reality illuminated by the light and positive possibilities. I can deal with a poor outcome, but It will be last with resolution and surrender. I have to act, pronounce and believe in a successful end. I must remain in light and hope; the alternative is my darkness…the kind of darkness each and everyone on this planet has felt and lived at some time during their existence.

So you received more than a quick answer I know…but I have been doubtful about my participation in this forum.
I pray everyone of you find wellness…of body, mind, and soul.

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@cmi Please consider staying with us – your personality sounds very much like mine, as does your family. My first months after the MAC diagnosis were marked by fear, insecurity & depression, then I found Connect. Like you, I was overwhelmed by the frightening details and unsure if I could continue. Then I looked "under the hood" and realized that most of the people here were projecting hope, and determined to live their best possible lives. When you see the "depressing" parts, please realize that we are often venting, or asking for help, from the only people who can really understand what we are experiencing.

Over time, I developed a philosophy. I decided to live my fullest possible life with bronchiectasis and MAC, taking prudent precautions, but not allowing it to rule my life. My body tolerated the meds for 18 months, not well, but enough to get the infection under control. From this forum, far more than from my doctors, I learned how to cope with medication side effects, the importance of daily airway clearance, the efficacy of 7% saline nebs, and the absolute necessity of finding the best possible care team and advocating for myself (even though this did get me "fired" as a patient by my first pulmonologist.) I also found this group to be much more of a source of research-based information that a typical blog since it is moderated both by Mayo staff and volunteer mentors.

Now, with the MAC controlled but not cured, I take obvious precautions, like not using hot tubs, keeping my equipment clean and avoiding sick people, but I have made the personal decision not to curtail travel or visits with my grandchildren. Others whose disease is worse, or who have other major concerns, may take more.

Whatever decision you make about continuing to visit us, I wish you all the best in your treatment.
Sue

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@cmi I had to respond to your post because first I wanted to say what a beautiful writer you are and are able to articulate everything you feel in such a beatiful and truthful way….something I've never been able to do. I joined this forum four years ago and was a deer in headlights after being diagnosed and had never smoked and had no lung disease ever in my family. I hesitated for years to write much because I just didn't feel I was smart enough. I was amazed at how smart and helpful these "beautiful and supportive strangers" (as you call them), our wonderful and smart mentors like Catherine, who has passed away and now @windwalker and @sueinm and others who just continue to pass on their knowledge and help us. Secondly, I felt the exact same way at the beginning when I joined and could never articulate it but you just did…."this forum scares me…reading the details of your treatment and setbacks…is depressing me." It was so depressing to me in the beginning reading all of these strangers treatments and setbacks but now, four years later, I read everything with great anticipation hoping to glean some new little piece of information from everyone. I have learned so much from these "beautiful strangers" that it's uncanny. Especially how to be your own best advocate. Now when I doctor says no to me or doesn't want to give me something I want I keep looking for someone else that will. And I think the 7% saline solution is a game changer. I had to tell my pulmonologist about it and that I wanted it!
So I was doubtful in the beginning about my participation in this forum, like you, but now am not. I still don't write too much (because if I wrote you like you I would write a lot more!) but I read everything. Hang in there. I'm grateful for these beautiful, supportive strangers. Nan

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Nannette and Sue, the encouragement is very appreciated. I too vow to live life fully, and Nan you sound like the strong advocate I worked as in healthcare for years as a Medical Interpreter…doctors either loved or hated me…
For right now, I will remain in appreciative mode…for each one of you…for advice or suggestions…I’d like to know if anyone has or knows of anyone that has banished this evil bacterium…for good. I have a phone conference with the National Jewish Hospital in Denver CO…sometime between today and Thursday.

All be well.

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