Just started a week ago the big three and feel so very sick

I'm so sorry to hear how sick you are feeling! Try not to be discouraged, you may just need to make some adjustments and give your body time to get used to them. That is good that you are now taking a probiotic. I don't know why some doctors don't recommend starting a probiotic when meds are started. I would think that should be standard protocol. I felt very sick when I first started the antibiotics but it did pass after about 2 weeks. I used Seaband Accupressure wristbands and they did help. I started a probiotic immediately. I take Azithromycin and Ethambutol in the morning after breakfast. The Rifampin should be taken 1 hr before or 2 hrs after a meal so I take that before bed. Are you taking all 3 on an empty stomach? That could aggravate the nausea. Best of luck! Hang in there!

Ethambutol first in morning, AZ with big dinner worked best for me

Did you start one at a time instead all one day? Talk to you doctor and start with one only first, after a few days add another one and so on. For me rifabutin was a no from the beginning. After two months of constant liver problems it was stopped and replaced with IV amikacin. I feel really sorry for you. We all know what you go through. Oh try chewing a slice of ginger- who knows, easy and cheap

Hi Lilliana,
I know how devastated you feel.
After 7 weeks being ill from the MAC tx, my pulmonologist and ID told me to stop the meds and f/u with a chest CT in 6 months. I am afraid I will get worse over time so trying my best to keep active, do airway clearance etc and hope for the best.
There is always Arikayce to try and Amikacin on nebulizer.
Good luck.....hang in there and live your life
Marie

Justaussie:
I too had a problem with the medications and have been taken off of them. I am 20 years older than you and have decided that rather than trying to save my life, I will try to live my life, day to day, and enjoy the "good" days. I have a hard time understanding the reason for me to be miserable for 12-18+ months on the meds, given my age, and am willing to give up the quantity of life for quality of life.

However, I'm not sure what I would do if I were younger. I am in awe of those who are able to tolerate the meds and who live fairly functional lives in spite of the meds and in spite of their ages. It can take time for the body to adjust to the medications and, in your case, perhaps allowing more time to adjust is possible. Of course, this is an individual decision and I wish you the best going forward..

@justaussie I am sorry to hear how hard this is for you. I was in the same situation at first, and thinking strongly about stopping the meds, but my primary was awesome at working with me to get through it (the pulmonologist was a crusty old guy who just said "yeah, it happens to everyone") I managed 18 months, taking them one hour before bed and eating a small snack with some ginger tea. I think it would have gone better in 2024 as they would have added Arikayce after a year instead of switching to daily meds.
Here are the things that finally worked for me - ginger tea, Gin-Gin (ginger) hard candies and ginger beer made with real ginger and eating 5-6 tiny meals a day.
Some things never tasted good while on the meds, like tomato sauces (fresh were fine), most meats, onions in any form.
Have you tried adjusting your diet?

Many thanks. I'm actually now taking all three before bed - a few hours after eating. I can't stand the nausea during the day. During the day I feel sick - but not like I do after taking them at night - then I feel like I want to throw up - so take as close to bedtime as possible and take my sleeping tablets to try and sleep through it. This is pretty miserable. I feel for everyone who has and does go through this - and other similar things. It's really horrible feeling like you're taking poison. I felt so sick - felt like better to take my chances on having quality of life over this. Will do my best to keep on them for as long as I can - but feeling this way - not sure I can. I don't understand why they can't come up with a better treatment. If as they say - the medications have a hard time actually getting to the disease to treat it - then surely a better way of giving them - injecting into the actual bacteria in the lungs or something. I don't know - I'm not a scientist or doctor - but seems there must be something better. Doesn't feel like we're in a very advanced society when this is the best treatment they can come up with. Apologies - I'm just really sad and angry and feel dreadful. Thank you for your support.

Thank you. Yes the rifampin is the worst - no doubt - feel so very sick as soon as I take that one. The doctor had me start Azith and ethambutol for 5 days - then added the rifampin. I found the rifampin worst - followed by Azith and etham. Yes - I've read about ginger helping with the nausea and will buy some. Thank you.

Thank you. It's horrible as you know well. Will get some ginger tea and ginger candy and ginger beer or ginger ale. Food does not taste good and some of it tastes absolutely horrible. Had some yogurt and muesli this morning - but the yoghurt tasted dreadful. Had bread for dinner. My coffee is tasting horrible too. Something I usually really enjoy. Usually love salads and fish - but honestly just want to eat bread or carbs right now. So wish I could get rid of this dreadful taste in my mouth all day. I usually get such pleasure from good food - I'm a bit of a foodie and love fresh and delicious food normally. Have you had any experience at something that works for getting rid of the terrible taste in the mouth? It's not metallic perse - but just feels like I want to throw up all the time. It is worst just after taking the meds of course. Thank you.

No need to apologize. This is a tough battle for sure and the length of time needed to be on the medications make it feel overwhelming. I totally get it! I hope you can work with your doctor to find a way through this. You don't want your cavity to continue to grow or to develop more.