Big 3 all at same time?
I'm starting the "big 3" soon and am curious about 2 things. One is about taking all of the meds at the same time (say a couple hours after evening meal)--for me, that's one azithromycin, 2 rifampin, and 4 (400mg) ethambutol. Who has success with that schedule, is that what your doc recommends? I picked up the drugs today, and got no guidance about that from my doc and didn't know to ask the pharmacist. Second question: I read that for my weight (about 55 kg), and taking meds 3x/week, I should be starting with 1200 mg of ethambutol. But doc has prescribed 1600; seems like a lot, given the risk of optical neuritis. I'm not going to start taking anything until I've had base line blood work done (in 2 days) and have my questions answered. I think patient experience is really important and value any input from folks here. Thanks!
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I have been on Big 3 for 1 year now and tolerating them well. I do take a probiotic min 4 hrs apart from any antibiotic. What works for me is taking Azithromycin and Ethambutol in the morning after breakfast. Rifampin should be taken without food (at least 1 hr before or 2 hrs after a meal) so I take before I go to bed. When starting meds I was 103lbs and prescribed 500mg Azithromycin, 800mg Ethambutol & 600mg Rifampin daily . You are right to question the Ethambutol dosage, it does seem high. What I found was 15 to 25 mg per kg of weight.
Winema, It’s best not to start them all at the same time, when starting I was told 10 days between starting each med, that way if you have a reaction you know which one it is. Also, did you have hearing eval and eye eval? When I was taking all three I was told the azithromycin and ethambutol should be taken at the same time.
Rifampin on an empty stomach
I have been taking all 3 since March '24 3x a week. I do Rifampin at 5:30 AM, go back to bed, do ACT's then ready for breakfast by 7:30 AM (2hrs after medication). On med days I do oatmeal for breakfast. Other days I do Greek yogurt or cottage cheese. I have Kifer at lunch time. I take azithromycin and ethambutol in the evening after finishing dinner. I take 1 probiotic in the morning after breakfast and 1 probiotic at 8 PM (PM - or 2 hrs. after taking the antibiotics on those nights). This has worked for me. I weigh 140 lbs. and take 1500 mg of ethambutol, that is what my doctor recommended, and it is based on the 2020 guidelines.
My research also has indicated 25mg/kg of weight if taking ethambutol 3X/week; 15mg if 5X/week. Thank you for verification!
I started those meds 5/23 so have only been on them a little while. My Dr told me A could be taken with or without food first thing in the morning. He wanted me to take R shortly thereafter and the E with lunch. It was a bit too much for my gut. Today I took A after breakfast and R with a light lunch which helped. I took the E about an hour after and have not had any side effects. So for me, spreading them out and having food inside gives my stomach a chance. I hope that helps. Good luck.
Hi W, I am just finishing a year of the big 3. I have been on them for one year , daily doses of 250 azythro, 400 rib and 1200 Ethambutol. Based on my reading here, it seems there is a large range of
Doses and frequencies that ID dr recommend . Not
One set Protocol. I don’t know why…. Maybe research has not discovered the magic numbers??? The drs weren’t much help with side effects. They minimised or ignored them , their goal was keeping me on meds for a year to wipe
Out the MAC. It seems
To have accomplished that but I had to find my own optimal way to administer meds. For me , nite time worked best. I don’t know if there is any magic to the timing or the frequency, but this blog was the best support and f/b to get thru this treatment. So in 2 weeks I get to stop the meds. Yay! The opacities have cleared, still some
Scarring from 8 months straight of Pnuemo but
Voila! I have been cleared. Fingers crossed
For the future.
I started at 55kg in weight. Three x per week. Same dose you are starting on. I rang my doctor worried about the 1600 of ethambutol. I don’t think she liked me questioning the amount and in the end said 1200 would be okay. I felt bad questioning her and so I just stuck with the 1600. 4 hours after first dose I had toes burning and tingling but didn’t worry, the third day I had pain in one foot and I could hardly walk on it. then started to get pains in other areas. The more I took the ethambutol the more intense the tingling and burning felt leading to the foot feeling like it was buzzing or vibrating. I rang to report my symptoms but Nobody got back to me. I tried quite a few times to get through to them. Left messages but still no calls back so I thought well maybe it’s not urgent that’s why they’re not calling and I just kept taking the MEDS when I went to get my next prescription. The pharmacist told me to keep on at the Doctors. So, I did and they finally got back to me 18 days later and changed the med to Clofazimine. now taking MEDS in my fifth month, I still have a numb big toe and mild neuropathy in feet and hands. This is supposedly very rare to get neuropathy at the very start of treatment so they say and suggest now that something else might be going on but I know I never had those symptoms before taking these meds. I’m a bit put off by the suggestion. we are all different. Don’t let this scare you though, This might not happen to you just make sure you report side effects immediately. I also only took ethambutol and Azithromycin for the first week and then introduced rifampicin a week later. I take Azithromycin and Rifampicin before b’fast with a full glass of water then Clofazimine with b’fast 2 hours later! Best of luck to you! Many tolerate the meds and you could be one of them.
I'm so sorry you had such a frustrating experience with your doc on top of the very worrisome neuropathy! I'm glad it's going better now. My pulmonary doc called me back this morning after I asked the question yesterday afternoon. He said the slightly higher dose of ethambutol (E)--at 1600 mg/day 3X/week, which is just under 30 mg/kg instead of 25mg/kg-- has a better treatment outcome than the lower dose. In his experience the optical side effects are very rare. He said it was up to me, whether or not to lower the dosage. But once I understood his rationale, I chose to go with his recommendation. Hang in there!
Yes, fingers crossed! Did you take all of the meds at night? My doc says Azithro should be taken with food, and then rifampin has to be taken on an empty stomach, and it doesn't matter, it seems with ethambutol. How did you do this all in the evening? Would love to find a workable schedule; figuring out how to do this without severely interrupting my life is going to be a challenge. I teach horsemanship, still ride, occasionally still play pickleball, go to the pottery studio, etc.