Mayo Clinic Connect
I am on my second reinfection after being treated at NJH, which I love my Dr. Now she wants me on the cocktail listed above and I was wondering if anyone else has been on this cocktail? Any other suggestions as I am very nervous.
Welcome to the MAC group on Connect, @dmarks.
I’m tagging a few members who I believe have taken antibiotics for MAC – the big 3 as they are often referred to here. Please meet @windwalker @tdrell @Paula_MAC2007 @lindam272 @irene5 @ling123 and @heathert. You can read more about theirs and other members on this main discussion thread:
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
DMarks, how was your first infection treated?
My first infection was treated with Azithromycin, couldn’t take ethambutol, rifampin and inhaled amikacin. I was clear for a few months…but it is back per my latest CT….I had two middle lobectomies as well…all at NJH…
@dmarks, Hello there, and welcome to our Connect group. Do you have a first name that you would want to share? Bummer that it came back, but that does happen unfortunately.. How long were you taking the azithromycin? There are recent studies that prove that staying on the one med longer is supposed to be more benficial. Also, there are other antibiotics they can try besides the Big 3. What is your doctor recommending now that it is back?
first name is Debbie.. I was on three meds for 18 months…azithromycin, rifampin and inhaled amikacin…. now Dr. at NJH is recommending same two but adding Clofazamine
@dmarks, Hi Debbie. I am confused, in one statement you said you could not take the rifampin or the inhaled amikacin; but then, just now, you said you took these for 18 months. Can you please clarify for me?
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@dmarks, Debbie, do you know what strain of mac you had or have now?
@dmarks, How much do you know about this disease? You may know this info already, but in the event that you do not, I will share. It is important to know exactly what specie of mac you have and the colony size. Colony size determines whether or not to treat it right away and whether the Big 3 is really necessary. It is a good idea to request a hard copy of all lab results for your own records to keep at home. Did you ever have a negative test result after your 18 months on the antibiotic, and then it turned positive?
Hi I am on Rifadin and azthroymcin and a new one, moxifloxacin. You have to have hearing tested while in rifampin. I have been on for over a year, hearing just fine….
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Hi Debbie. I responded in another post to you that I took Clofazamine. The only side effects I noticed was a nice tan, dry skin and dry eyes. Nothing debilitating at all. Best to you.
@dmarks, Hi Debbie – Since March, 2017, I have taken azithromycin, ethambutol and rifampin – a little chest rash at first but it cleared up right away. Good luck! I just need to find a way to quit coughing so much.
ethambutol almost killed me so my Dr. switched me to inhaled amikacin. Now since the reinfection I am on clofazamine….wish you well
I’m on the same three. Hearing fine also…
These posts are helpful to me since I couldn’t Tolerate adding Ethambutol after starting on Azithromycin and Rifampin a week apart each. My ID doc decided I should d/c all of them since I don’t have any symptoms & seem to be doing well overall. (59 yo, exercise regularly, no night sweats, wt loss or lung infections since last winter.) However, I don’t know the species or colony size as @windwalker (Teri) recommends. Can MAC be worsening even though I feel good? Thanks, i’ll Look into that this week!!
Good morning, I am dealing with MAC too. I feel good, work out every day and I also work everyday. I am waiting g for test results to come back from Colorado to see if MAC is gone or has decreased.
@cld120, I do not know the answer to that question. Not even sure it is that cut and dry. I have heard of people being shocked that they were infected because they had no symptoms. I always get symptoms, but who really knows what those bugs are doing down inside of us. That is a question worth investigating.
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