Anyone taken the Big 3 on every other day dosing schedule?

Hi !
Yes I did the thrice weekly regimen for 18 months and currently MAC clear! Also have Bronchiectasis. This schedule seems to lessen side effects. I found taken at night b4 bed worked best for me. However, I just returned from NTM conference in San Diego and they are doing new clinical trials on the effectiveness of using a 2 drug regimen and dropping the rifampin. ( which seems to cause a lot of the intolerance for most people) so far trials lookin promising. I don’t know your particular situation but worth a discussion with your doctor.
Hope this helps!
Dee

I too was on big 3 M, W, F. I was so happy over the weekends to be free of meds.

Hi Dee! Oh, thank you so very much for sharing your experience w this treatment schedule! I will be seeing my ID Dr on 6/16 to decide if I’m game to try the treatment or not…this gives me hope that perhaps I can do it w this dosing schedule!! I sure appreciate your input to help me with a daunting decision!

Hello & thank you for your reply! Was this dosing schedule effective for you at the end of your treatment? Did you suffer many side effects during treatment? If so, may I ask how severe? I’m so torn…don’t know what to do…but pray I’ll make the right decision and self educate myself the best I can.

Same however I did drop rifampin early on and protocol was still successful in clearing the MAC

Interesting. I started the big three over a year ago on the M-W-F schedule. I only made it through the first dose and had to stop. Extreme diarrhea and something like panic attacks started. I will have to try again probably in the fall but I was curious what was happening to you that your doctor was ok with you dropping the rafampin and if you still experienced any really bad side effects after dropping it

I don’t want to influence or discourage you in any way, your docs will advise you and doing your research is a good idea. I didn’t have this forum when I began or options 20 months ago. I started off with the wrong docs for me and my treatment was a bit messed up. I also have dyssutonomia so my body reacts differently to things. I originally started on daily treatment azithromycin, ethambutol, rifabitin, started 2 weeks apart. I got horrible flu like symptoms from rifabutin. After attempting it 2 times with same reaction, I was switched to levafloxacin, then went off that after 4 months due to tingly toes and achy joints. After 2 months of daily meds I went to 3 times a week. I had 7 sputum tests during that time and all were negative until my last one. I was only on azithromycin and ethambutol the last 8 months. My current doc wants 2 more sputum samples and we are waiting to see if I have symptoms the next 3 months. In hindsight, I regained weight plus extra, cough went away, and no more night sweats so I’m not upset I went on meds, just hoping I had a false positive. I just stopped meds one week before I got the news, I’m just trying to get my stomach healthy again and enjoy no meds as long as I’m able. I’m doing airway clearance and trying to eat well. My recent CT showed no change from 8 months ago so that’s good. One suggestion if you go on meds is to get hearing and eye eval first, I have a bit hearing loss and tinnitus but not sure if it was before meds since my hearing eval was 8 months after meds started. Good luck and hopefully you’ll be fine no matter what you choose.

Watch out for the rifampin. It caused big time trouble for me. If your ID doctor could, have him give you something else. Mean while, when I was on them, I learned to sip lemon ginger tea and eat crackers to calm my system.

I was getting really ill so they removed it and it stopped the worst of it - continued stomach cramps but nothing intolerable. Also reduced ethambutol to 900 from 1200mg to further curb side effects - still seemed to work on reduced dosage. Plus I’m not a large person and always seemed odd to me that I needed same dosage as much larger individuals - I think there is more and more research on this

Thanks for the info. I’m also not a large person and the one dose that I had was 1200 of the ethambutol, 500mg of azithromycin, and 600 mg of rifampin. It took months after only taking it for one day to feel normal again. I’m glad they were able to adjust yours to make it tolerable for you