Discussions
Discussions
When to stop taking the Big 3
I saw my Infectious Disease doctor yesterday following up on my most recent sputum culture done in early April and it was negative for Mycobacterium.
I have been on the Big 3 for over a year. When I asked if I could stop taking the antibiotics, he said the protocol was to stay on them for 12 months after the last negative culture. He encouraged me to continue to take them even though I am doing well.
Replies
Hello! It us really difficult to remain on meds when you are starting to feel better, However, your doctor wants to make sure that you will not have a reoccurrence. see how long you can tolerate the meds, keep your Pulmonogist and ID doctor posted on a regular basis.
I assume that you are seeing an audiologist, opthomologist, getting labs done on a regular basis?
more information on the NTM ATS Guidelines:https://www.aboutntm.com/diagnosis/#treatment-guidelines
K
Hi ReRe. It sounds like you are on the right track! I agree with Katie. It can be difficult to continue to take medications when we are feeling better, however, NTM can be very hard to get rid of. I would encourage you to follow your doctor's recommendations and keep taking the medicines prescribed. You've got this and you can count down the days until you are done! Maybe get a calendar and mark off the days? :)
Comments
Hi ReRe,
I understand your frustration. I agree with Katie and Christina. The standard protocol is to continue antibiotics for 12 months after negative sputum conversion. During my last ntm infection (Simiae), I was on meds for 22 months. I did not get to negative, only to the smallest measurable amount of NTM. I told the doctors I needed a break. Now, two years later, it is back in full force and I get to do the whole cycle again! This time, I will do the extra 12 months as required!
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