• #171205432181

    I was on Zithro MWF for a few months. When I started have NTM (avium) show up they took me off the Zithro immediately . I am now on it full time (every day) to treat my NTM (avium). They took me off it so that they could use it with the two big MAC drugs… it gives the NTM a big punch.

    Profile photo of mattnscmattnsc

    We are still in the process of waiting for three positive cultures. We’ve had two so far, but they were done only a couple of weeks apart. I’m wondering if that is standard? Or is that too close together?
    Also, those of you who didn’t show involvement on the CT Scan, are they planning ongoing CT Scans to make sure there isn’t future involvement? That is the next step for us if the third culture is positive – a CT Scan.
    Thanks in advance!

    Profile photo of JulzJulz

    Thank you all for your replies. I will definitely put a call into her doctor. She is not currently being treated for her NTM because it is not causing any problems for her. The treatment can be long and harsh. Her lung function is actually it’s highest it’s been in a long time (112%, baseline for a few years was 96%). TonyaH: I never thought of her having the “luck” of culturing another NTM, besides the m. abscessus. ldevoti: I am sorry your daughter is going through the waiting of the culture. We had to wait 8 weeks and then doctor said they need 2 positive cultures before they can officially say it’s an NTM. So we then had to wait another 8 weeks for the 2nd culture.

    Profile photo of linalina

    I cultured MAC about 6 months ago once. Not since. I don’t do the MWF maintenance Zithromax. But they have used Zithromax with me to treat flare-ups. They had done a CT scan and it showed that MAC was not causing me problems at the time. That info was used in my treatment course.

    Profile photo of raquelbraquelb

    i had been on maintenance Azithromycin for several years. just recently we thought i might have MAC and my docs immediately discontinued Azithromycin. we’ve since found out the first culture was just a fluke, but docs have not advised to restart it.

    Profile photo of mattnscmattnsc

    My daughter is in the process of culturing this now. We don’t know the specifics yet because it is still growing, but we also took her off maintenance zithromax for the same reason – to keep her strain from becoming resistant and to save it to use as an actual weapon against the bacteria.
    I would definitely question your doctor about it if he/she has your child on a maintenance program using zithromax.

    Profile photo of PRAY4PRAY4

    Has she been prescribed azithromycin for an exacerbation, or as maintenance? Andrew was on MWF azithromycin for a couple of years before his first culture of m abcessus. He was immediately taken off azithromycin as maintenance since we have to use it as part of a cocktail of meds for m abcessus exacerbations from time to time, and they don’t want to risk tolerance. There have been some studies that show a link to maintenance azithromycin and NTM, but I can’t put my finger on them right now. But primarily for Andrew, we stopped so we could keep that med ‘in our back pocket’. We do use it from time to time added in with other therapy.

    I did want to mention that I never make a decision on meds based on the fact that he already cultures something. Your comment about ‘I see no harm in her taking it since she already ahs it.” makes sense if there was only one strain of one class of one NTM out there. However, there are so many organisms within the NTM family, all different strains all with different sensitivities….and that goes for every type of bacteria whether it be pseudomonas, staff, moulds, etc….. Just something to think about!

    I would talk to your doctor about the length of treatment recommended and ask them if they are considering her NTM in their choices of antibiotics. I’ll bet if you tell them your concerns they will explain their thoughts to you.

    Profile photo of ajlindsleyajlindsley

    Hi All: My daughter was just prescribed azithromycin. When I googled it to see what the side effects were, the CFF had some information on there that it should not be taken if you have been dx with an NTM. One place I read said that taking azithromycin could increase your chances of culturing an NTM. If that is true, then I can see no harm on her taking it since she already has it. What I am wondering is if it will make it worse for her? Does anyone with an NTM also take azithromycin? Have you noticed an increase of problems with your NTM while taking the medicine? She was prescribed it to help combat pseudomonas along with TOBI. Any information would be appreciated. Thanks.

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