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Typical length on Azithromycin and Ethambutol before negative culture
Hello, Community. I was prescribed Azithromycin and Ethambutol on a 3 times weekly regimen for Mycobacterium intracellulare, after a 6 month clinical trial on daily Clofazimine for 6 months by itself.
After the first month, I dropped from a +2 smear and +3 culture down to just a few cells in each. I was very hopeful. Then I did the sputum culture after 2 months on the meds. Results showed that I was back up to a +1 smear and +3 culture. I recently submitted my sputum for the 3 month labs.
Feeling a little discouraged and wonder if any of you have experienced an up and down trend in your monthly testing. I am wondering how long many of you have taken meds before experiencing a continuous downward trend.
I had not done anything different. I will say that for this 3rd month of testing that I just turned in, I have less sputum. It is pretty clear. I always have some pink tinges because of the saline, and I am one who is prone to lung bleeds anyway from bronchiectasis, although the bronchiectasis is not severe.
My doctor had told me that, if I am not negative after 6 months, she will add Arikayce to the mix. She said it is a game changer and that it usually turns her patients negative after 4 months. She said that if patients have difficulty with tolerance, they don’t have to take it every day.
Do people who will respond to the original meds usually become negative by 3 months? I know that it takes several negative readings, but I am curious about what the average time length to initial negative readings is.
I sure would appreciate any insight or experience. I don’t really feel symptoms but have noticed that I get extreme fatigue since starting the Azithromycin and Ethambutol. Is this normal? I did not feel this when my numbers were worse.
Thank you so much for any insight.
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I was on medication for about nine months before being culture negative for four months. Then I had several positive cultures and added Arikayce. Was permanently culture negative within another two months. That was with daily treatment from the start. So yes, sputum cultures can take a while to go negative and can also vary as they are random samplings of what is in your lungs
Also in my case, I never had any symptoms from the MAC and was definitely more fatigued with treatment
You shouldn’t be afraid of the Arikayce as it can work so well but if your lungs are already sensitive you might want to start less frequently and build up as tolerated
I started daily and had to stop after a couple of weeks and then build up the dose gradually once the hoarseness and cough improved but then was mostly fine
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1 Reaction@dulwich, thank you for the helpful information. I guess it makes sense that different sputum samples at different times will have varying ants of bacteria present.
I read that Arikayce is approved only after 6 months of treatment with other meds have not resulted in negative cultures. Is there a reason why your doctors waited a few more months before adding it?
Also, were you on 3 meds or 2 during your initial treatment, and were you taking them daily or 3 times weekly? Did your doctor ever tell you why you experienced more fatigue when on the medications? Did they affect your blood counts? I have read from others who successfully completed treatment that their energy returned once they stopped the meds.
I have read that, besides the hoarseness and sore throat, that negative side effects from the nebulized Arikayce were less than other forms of the drug. Did you find this to be the case?
So, once you have a negative culture, I read that they want 12 months of negative before stopping meds. When you have a positive culture, does the count towards 12 months clear begin again?
So many questions. I really appreciate you sharing your experience.
There were a lot of bumps in that first 9 months which was after a treatment interruption at start of Covid pandemic
I was on 3-4 medications at different times and did show a steady decline in bacterial load over those months so that was why we waited on Arikayce
I stayed on full daily amount of azithromycin, clofazimine and Arikayce and 3xs per week ethambutol for 18 months once cultures were negative. ( had become allergic to rifampin)
Guidelines say 12 months but there is a small study from Japan that suggests at least 15-18 months is better in reducing relapse with same bug
Arikayce side effects were better after two months
It was a slog, but yes energy is better off meds
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3 ReactionsThank you so much for elaborating. So, you had 9 months plus the additional 18 months of treatment? Yes, that was quite a slog. You endured a lot and were successful. Congratulations to you!
May I ask how old you were during this period? You seem to have tolerated the treatments well. Also, what was your dose of Clofazimine?
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1 ReactionAge mid 60s, clofazimine 100mg
How was it with the Rifampin for you? I had a lot of problems with it after 13 months. FINALLY after 2 hospital stays, the last hospital paid attention an took me off it.
Developed low platelets from antibodies
Very rare
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1 ReactionI did 28 months of AZ, Ethambutol, rifampin. We went an extra 10 months even though the culture was negative because my radio-graphical (CT scan) still showed infection. 6 months after stoppage, I developed a fungal infection
You endured a lot. I hope that your doctors are able to eradicated the fungal infection.