← Return to Bronchiectasis: New Diagnosis
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Replies to "Hello. Thank you for being here. I was diagnosed with MAC 8 weeks ago at the..."
@marellen Your doctor probably put you on a 7 day/week regimen because of the cavity. I started with that treatment as well but was unable to tolerate it. With MAC you need to have a close relationship with your doctor. Talk to him or her! Your doctor may have to lower the dose of one or more of them. Some of us are on a 3 day (MWF) schedule. If you can tolerate two perhaps you could do an inhaled Arikayce which goes right to your lungs but is not without side effects. Talk to your doctor. I’m sorry you are experiencing those side effects. My guess is they are dose related. irene5
@marellen I too had problems with nausea from taking the drugs in the morning and on an empty stomach. I consultation with the pulmonologist's very experienced nurses (he was not very approachable) I switched to taking the meds at bedtime with a small amount of (non-dairy) food. I still had the nausea, but because I was asleep through a lot of it, it was tolerable. When I finally addressed it with the doc, he wasn't too happy, but said it was better to take it on that schedule than to quit. I initially was on 3X/week, then had to increase to daily due to cavities (since cleared!) - I don't think I could have tolerated daily at first. Maybe your doc would consider backing off for a while?
Also, I found it easier to deal with the nausea by eating very small amounts every hour or two, so my stomach was never empty or full. I had to force myself - sometimes literally setting a timer. Just make sure what you choose to eat is very nutritious - I chose cheese, yogurt, protein bars, fruit & vegetable smoothies made with extra protein powder, cashews, boiled eggs, as well as a few fruits.
Good luck!
Sue
Hi @marellen, I'd like to also add my welcome. I moved your messages to this discussion
– Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/
Here are a few discussions that I recommend reading (and joining in):
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
– You can feel better! https://connect.mayoclinic.org/discussion/you-can-feel-better/
– NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/
I encourage you to browse through all the discussions. See a list of all of them here: https://connect.mayoclinic.org/group/mac-bronchiectasis/
Keep asking questions and then ask some more.
Carol, Hello, depending on what your suseptibility tests shows; you may be able to have the Ethambutol substituted with inhaled Amikacin. May want to ask your dr about that. Do you have your suseptibilty test results at hand to discuss?
Hi Carol. I was diagnosed with MAC and Pseudomonous early 2019 after bronchoscopy. Local pulmonary doc put me on the same meds as you daily to take on an empty stomach first thing in the morning. After a short period of time I would have nausea but not vomit. I also had numerous BM's every day. I am a slim person anyway and then lost 15 pounds, lost energy and appetite fell off the charts. My doctor relocated to Birmingham from Montgomery. After 6 weeks I developed what seemed to be turning into chronic sinus problems. On a follow up visit the doctor said I had to gain weight and get my sinus cleared up. Then he said to stop taking all the meds. I even asked if I had to take them all at once and he said yes. Either take them as ordered or not at all. Then the cherry on top, he said "You may just have to live with it." Lots more story and can post what happened next but have ran out of time at the moment. There is hope. Faye