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Hi to all of you who have been diagnosed with bronchiectasis and MAC. I was just diagnosed with it as well after a bronchoscopy was done in August. I'm almost 73 and have been experiencing bouts of pneumonia at least twice a year for many years. My PCP sent me to a pulmonary specialist who finally came up with this diagnosis after the bronchoscopy. She has put me on 3 antibiotics just like all of you. I'm to take azithromycin, ethambutol and rifAMPin for the next 18 months. She has ordered blood work every month to monitor my liver and kidney functions. I have to have an EKG periodically to monitor my heart as well as periodic visits to an ophthalmologist and audiologist for eyes and hearing. I am at this point terrified of these drugs if they have the potential to damage all of my organs. Have any of you experienced severe problems with these drugs? She told me that my tears, saliva, and urine will be orange, and I may have nausea and diarrhea as well. Any words of encouragement would be most appreciated at this point.
Replies to "Hi to all of you who have been diagnosed with bronchiectasis and MAC. I was just..."
I too was terrified of the meds but the threat of what would happen without meds was also terrifying. I know from reading posts here that we are all different, some manage meds. easier than others. When I was on meds for 18 months I was not a happy camper. Just getting diagnosed with a lung disease was bad enough, I had my good days and bad. My body seemed to adjust some to the meds after a while and I survived the 18 months. I tried to just get through one day at a time, but some days it wasn’t easy. Between taking meds and supplements at the correct times, eating to gain weight, airway clearance and getting in exercise, I felt so regimented. When I first took meds. I felt like I was taking poison, then I had to change that mind set to telling each pill to go get that Mac… you have to take one day at a time and hope for the best. Are you taking the big 3 daily or 3 x week? I was switched to 3 x week after a while and it was much better. Good
luck and take each day as it comes.
jloy, yes it is scary but once you start the meds it is like taking other medications. Many of us have been there and felt exactly the same way. Probably there will be side effects but hopefully you will be able to tolerate and adjust. Listen to your body and react if needed. It seems your pulmonologist is smart and knowledgable (I was not that lucky)Please remember to take probiotics and check eyes and hearing regularly. And ask questions here, practical things, that usually doctors do not have time to discuss. I learned a looot here; people who experience the same are very helpful. I hope my post will give you some strenth.
I have been on the same drugs you are taking for 14 months. The first few months were challenging but I eventually adjusted to the meds. Ondansetron was a huge help for the queasiness but the last few months I have not needed it. My bloodwork has indicated slightly elevated liver numbers but the doctor said they are within acceptable limits. I was a nervous wreck when I first started but the treatment has been doable. You may very well handle it much better than you think. Good luck!
Mary Jane Childs
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Did your pulmonary specialist also diagnose Bronchiectasis or COPD? Were you advised to use any airway clearance routines to help get the "crud" moving out of your lungs?
I always suggest that people new to our support group think about beginning with some basic reading.
Here is a good place to start:
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf
After you read it, you may have a lot of questions - come on back and ask! We are here to help.
Sue
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