Anyone stopped the Big 3 after 6 months? What was the result?
I have MAC non cavernous and had a bronchoscopy to diagnose it.
I am struggling with the Big Three antibiotics side effects. Tired, rash, eyes feel different. Even taste has been affected. I have only been on them for 4 months.
I don’t have any wheezing or coughing or any problems with my breathing. I am wondering if anyone has ever stopped the Big Three after 6 months with good results?
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I would suffer up to six months, have a sputum culture and see if you converted- they say it’s usually after six months or even have the sputumculture for respiratory culture, fungal culture and AFB now.
I too, am suffering from the side effects of the big three, been a year of treatment already. This month i see the ID and will ask him if i can stop. I have been always aymptomatic, MAC was discovered by accident with a brochoscopy for another issue. No sputum, no cough, breathing okay. My PCP says my chest xrays will always look messy because of the MAC. How will i know if i have gotten clear of the MAC?
The only way to know if you're clear of the MAC is through a sputum culture. Even though you're symptom-free it doesn't mean that the organism isn't in there wreaking havoc on your lungs. The very least you should do is scrupulous airway clearance twice a day. If you can't produce sputum on your own, talk to your doctor about setting you up with an RT who can show you how to do it.
I was taking Doxycycline 1/2 dose & felt fine. CT Scan showed more deterioration so started on Three Antibiotics. I have been so sick. Nausea and Vomiting, Diarrhoea, back pain and exhaustion. Unable to function normally as am usually quite active. I’m questioning now if quality of life better than this.
@lynne54 I would talk to your doctor about your side effects and see if they can work with you to find a drug protocol that is more tolerable for you. NTM specialists are well versed in this, if your doctor is not an NTM specialist you may want to consider seeking one out, though it generally takes some time to get in. There are options, do not assume that if you are not tolerating your current regimen that it is “this or nothing.” Your treating team maybe able to make changes in the drugs, dosage, timing, with food without, etc. It’s a nuanced analysis (despite what a lot of general pulmonologists and infectious disease doctors think). But it is an ongoing process and you need to keep in close contact with your treating doctors to find what will work best for you.
I was on a version of the Big 3 IV thru a PICC line for six months. By process of elimination, I realized the Tigecycline was causing the N&V. The ondansetron prescription I was given did not help with the N&V. My NTM Pulmonologist prescribed promethazine 25mg. I would infuse the Tigecycline at night and take the promethazine about 30 minutes prior since it made me drowsy. I also drank small amounts of ginger ale. This helped.
Thanks for your input👍
I see an Infectious disease doctor and a pulmonary specialist at MCV in Richmond, Va.
Have another apt. Soon and will write all my questions down.
I am still on the Big three.
1. Clarithromycin ER 500 mg tab. One three times a week
2. Ethambutol 400 mg tabs, 4 tablets three times a week
3. Rifabutin 150 mg capsules. Two caps three times a week.
I will try to make it to the 6 month mark in July👍
Thanks for your responses.
I think the Diagnosis and Prognosis that you are initially confronted with, is a shock and hard to deal with but after reading your comments and advice, and your support, you realise that you are not alone in the fight against this Disease so I will now look more positively at the treatment for NTM and also explore other alternatives.