Just started big 3 for MAC: Questions about dosing and more

Posted by bmiller57 @bmiller57, Wed, Apr 8 8:01am

on my third dose of the big 3 what can i expect for common side effects and how long before i feel any better ???? and are all of you taking the 3 the same day how are you dosing ??

@bmiller57 There are different schools of thought on that subject. When we lived in Tennessee I was on all three meds at the same time. I struggled with that and the doctors “assumed” it was the every day dosing causing the problem. I was switched from Clarithromycin to azithromycin and to a three day a week schedule. Now I am being treated in Massachusetts with the same meds and schedule but was introduced to them one at a time over a three week period to determine which was the culprit causing issues for me. The dosages of Rifampin and ethambutol were adjusted accordingly. I am also starting Arikayce. So the bottom line is that everyone is different in the line of treatment for MAC based on age, tolerance, and comorbid conditions. It is not a one size fits all treatment as many have mentioned on this site. Some members are fortunate not to have disturbing side effects and others have difficulty with the meds. If you go back in the site you will find a good schedule of taking the meds from Katherine (former mentor) and others. Good luck! Irene5

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Hello bmiller, Welcome to the group, there is a wealth of information here. I have been taking the big 3 for about 7 months, 3 times weekly all 3 antibiotics on the same day. The Azithromycin was causing major diarrhea until I started taking 2 Imodium pills on an empty stomach 1 hour before taking the 500mg Azithromycin pill. Now I have no issues. Good luck to you. Bill

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@bmiller57, Hi there. Welcome to our group! I am so glad that you found us. Can you tell me more about yourself? For example: had you suffered with mac very long before getting your diagnosis? Are you experiencing many symptoms right now?

Liked by Chloe Liu

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@bmiller57 Now to specifically answer your question. It took me one year to feel better after being on my meds. You can click on my photo icon and read how I was treated. Treatment plans should be tailored specific to each patient. So many things factor into what gets prescribed for various patients. Probably the main thing is having a 'Suseptibility' test done on your sputem to see what antibiotics will work for you. I did catch pseudomonas in the Spring of 2016 while on my antibiotics, so they switched out my doxycycline for inhaled tobramycin. That treatment totally wiped out the constant cough I had had for 10 yrs. Have you had a chance to read over much of our older posts here? Are you able to navigate this site alright?

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@windwalker

@bmiller57, Hi there. Welcome to our group! I am so glad that you found us. Can you tell me more about yourself? For example: had you suffered with mac very long before getting your diagnosis? Are you experiencing many symptoms right now?

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i honestly dont know how long ive had mac i am a heavy smoker so i just figured the cough was from that my primary doc thought i had pneumonia sent for xray didnt like what he seen sent for ct scan then off to ER was admitted they did many blod tests and a ct with contrast tht showed a large cavatery lesion in my left lung more testing finaly diagnosed with mac this all took place end of feb. as far as symptoms i have shortness of breath that set in when i had the pneamonia hasnt let up discomfort in chest dull aches and dizziness

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I am taking the Big 3 3 days a week, Monday, Wednesday and Friday…..

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Hi @bmiller57, I'd like to add my welcome. Please take some time to browse through all the discussions in the MAC & Bronchiectasis group https://connect.mayoclinic.org/group/mac-bronchiectasis/
Members have shared a treasure trove of information that will help you as you get to know more about this condition, treatment and living life. Heck you'll even get answers before you knew you had questions. 😉

To get you started, here are some discussions that will help answer the initial questions you asked:
– MAC Treatment: When will I see side effects? https://connect.mayoclinic.org/discussion/when-will-i-see-side-effects/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Supplements and the Big 3 https://connect.mayoclinic.org/discussion/supplements/
– The big 3 antibiotics for MAC https://connect.mayoclinic.org/discussion/the-big-3-antibiotics-for-mac/
– NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/

BMiller57, What dosage and schedule are you on with the big 3?

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@windwalker

@bmiller57, Hi there. Welcome to our group! I am so glad that you found us. Can you tell me more about yourself? For example: had you suffered with mac very long before getting your diagnosis? Are you experiencing many symptoms right now?

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ive suffered with symptoms about year before getting diagnosed now i have been on the big 3 for 3 weeks my symptoms have not improved and some days worse this is really playing hard on my mental state not doing well

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@bmiller57

ive suffered with symptoms about year before getting diagnosed now i have been on the big 3 for 3 weeks my symptoms have not improved and some days worse this is really playing hard on my mental state not doing well

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@bmiller57 Boy do I get that! I am so sorry. I am suffering debilitating migraines and GI symptoms. Many days I am not able to get out of bed. Call or email your doctor! Maybe there’s something he/she can suggest. My ID doctor recently changed my dose of Rifampin. This a difficult journey for many of us. Sending you a hug and positive thoughts. irene5

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@bmiller57

ive suffered with symptoms about year before getting diagnosed now i have been on the big 3 for 3 weeks my symptoms have not improved and some days worse this is really playing hard on my mental state not doing well

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@bmiller57 I have spondylitis and a precarious spondylolithesis so I understand that pain as well so you are definitely not alone! Adding your AS to the mix is, I’m sure, even more frustrating. irene5

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@bmiller57

i honestly dont know how long ive had mac i am a heavy smoker so i just figured the cough was from that my primary doc thought i had pneumonia sent for xray didnt like what he seen sent for ct scan then off to ER was admitted they did many blod tests and a ct with contrast tht showed a large cavatery lesion in my left lung more testing finaly diagnosed with mac this all took place end of feb. as far as symptoms i have shortness of breath that set in when i had the pneamonia hasnt let up discomfort in chest dull aches and dizziness

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@bmiller57 Hello. Lung issues are uncomfortable; I dealt with them for many, many, years. One thing that helped me with the tightness in my chest was drinking 'Breathe Easy' tea by Traditional Medicines. I buy it at Kroger's Grocery Store in the health food isle. You can also buy it online. It doesn't taste too bad. I would always use honey and leave the teabag in the entire time I was drinking it to get the maximum benefit. It is imperative that you quit smoking. I know it isn't easy, but it is a must. There are products available to help with that, and sometimes insurance with help pay for it. My sister who has an incredibly addictive personality; finally kicked the habit by hypnosis. She had smoked for over 30 yrs. The road to wellness with this disease can be long for some, but not impossible. Once your meds kick in, you should start to feel better. I went for yrs. feeling horrible, but now I feel great. I still have serious shortness of breath and tire easily. Those two things will not change for me as I have very low lung function due to COPD and lung tissue loss. I never smoked, but grew up with two parents that did. The smoking killed my mom at age 58, and my dad at age 75. I believe my bad lungs are the result of inhaling secondhand smoke for so many years. So, please try to quit.

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@bmilller57 I too quit smoking after many years of addiction with hypnosis. I had tried everything else…Hypnosis for me was heaven sent and incredibly easy. Good luck.

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@alleycatkate

@bmilller57 I too quit smoking after many years of addiction with hypnosis. I had tried everything else…Hypnosis for me was heaven sent and incredibly easy. Good luck.

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alleycatkate, I am so happy for you. I stopped smoking when I was 30 and I'm 68 now. I did not smoke that much, just on social occations. You will feel better and have less chance of getting lung cancer. Best Wishes and Good for You.

Liked by alleycatkate

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@irene5

@bmiller57 Boy do I get that! I am so sorry. I am suffering debilitating migraines and GI symptoms. Many days I am not able to get out of bed. Call or email your doctor! Maybe there’s something he/she can suggest. My ID doctor recently changed my dose of Rifampin. This a difficult journey for many of us. Sending you a hug and positive thoughts. irene5

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lilypaws I also suffered from migraines and had Botox injections by a rhematologist. That helped for awhile and then they came back. My doctor thought I had Occipital Neuragia, but I went to Mayo and found out it was just migraines. He put me on different medicines and I have been seeing a Physical Therapist. Strengthening my neck has really helped. I seldom get a migraine now. I hope this helps. He also told me I was taking too much meds and had rebound migraines. I can only take 14 Tylenol, Rizstipton 9, and Compazine 9 all just in a month. So I have been keeping track of what I take and how many and I seldom have a migraine now. Good Luck, I know they can be awful.

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@lilypaws

lilypaws I also suffered from migraines and had Botox injections by a rhematologist. That helped for awhile and then they came back. My doctor thought I had Occipital Neuragia, but I went to Mayo and found out it was just migraines. He put me on different medicines and I have been seeing a Physical Therapist. Strengthening my neck has really helped. I seldom get a migraine now. I hope this helps. He also told me I was taking too much meds and had rebound migraines. I can only take 14 Tylenol, Rizstipton 9, and Compazine 9 all just in a month. So I have been keeping track of what I take and how many and I seldom have a migraine now. Good Luck, I know they can be awful.

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@lilyoaws I just emailed my doctor to see if she can prescribe something. Thank you. irene5

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