I think it's important to know what the side effects could be and have the routine tests to monitor your response to the drugs. However, there are plenty of us who tolerate the drugs with only minor side effects so don't let that scare you. It is important to take a good probiotic (at least 4 hours apart from any of the antibiotics). I take Lactobif 30 and it is working well for me.
Jarro-dophilus is another one that is often recommended in this group. Wishing you the best!
I think it's important to know what the side effects could be and have the routine tests to monitor your response to the drugs. However, there are plenty of us who tolerate the drugs with only minor side effects so don't let that scare you. It is important to take a good probiotic (at least 4 hours apart from any of the antibiotics). I take Lactobif 30 and it is working well for me.
Jarro-dophilus is another one that is often recommended in this group. Wishing you the best!
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.
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.
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.
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.
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.
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!
Hi Sue, A few questions, diagnosed with BE because of cough this was 2 years ago. I was given a vest.
Bronchoscopy 6 months ago showed MAI, went to ID Dr. She did not put me on the Big 3, because my symptoms were not bad, no infections, no cough, slight shortness of breath, no cavities.
I am 78, work out or walk three times a week. Meat once a week. I am also blind in one eye, scared of antibiotics. I feel good, when to start the Big 3? Signs to look for, coughing up blood, yikes. Are my lungs getting worse and me not know it? Thanks for any info you and group can give me.
Hi Sue, A few questions, diagnosed with BE because of cough this was 2 years ago. I was given a vest.
Bronchoscopy 6 months ago showed MAI, went to ID Dr. She did not put me on the Big 3, because my symptoms were not bad, no infections, no cough, slight shortness of breath, no cavities.
I am 78, work out or walk three times a week. Meat once a week. I am also blind in one eye, scared of antibiotics. I feel good, when to start the Big 3? Signs to look for, coughing up blood, yikes. Are my lungs getting worse and me not know it? Thanks for any info you and group can give me.
Hello Diana, I am not a doctor, so I cannot answer the question we all ask ...,"when to start the Big 3?..." But matbe I can point you to a few resources to help.
Let's start by saying many here live for many years with a diagnosis of MAI/MAC/NTM who never get to the point where the antibiotics are required. For others, their overall symptoms and levels of infection are such that antibiotics are the immediate response. Then there is the great, gray "in between."
The experts constantly explore this subject. In 2020, guidelines for clinicians were issued, but it is pretty heavy reading: https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf
For a more user-friendly explanation, see this YouTube Video from the National Jewish Health Patient Conference in 2022.
In addition to the vest, are you using airway clearance exercises to get the mucus out after it is loosened up? Do you use inhaled saline to make your lungs less welcoming to the bacteria?
If you have constant itching, liver function needs to be checked. Liver issues are a potential side effect of the Big 3; itching can be a sign of decreased liver function.
Please call your doctor.
Thank you for saying this. I told my doc about the severe itching and he ordered blood tests. I do have liver damage and anemia. So I am off the antibiotics and getting monitored so we can see my blood return to normal.
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.
I'm supposed to take the 3 meds daily. I haven't been able to start taking them yet because my pulmonologist has ordered baseline reports from an audiologist; ophthalmologist; immunologist and also an EKG. It seems like it's taking forever to even get these appointments scheduled so I can start the meds. My insurance finally approved my ophthalmologist appointment this morning, but they have no opening until December. They are going to try to work me in more quickly, and I'm praying they can get me in sometime within the next week. It doesn't make that easier due to the hurricane that's going to hit Florida this week. In the meantime, I keep reading and researching bronchiectasis and MAC. I was really bummed when I learned yesterday there's no cure for it. I guess the strong antibiotics are supposed to clear it as much as possible and inhibit growth of the bacteria.
I'm supposed to take the 3 meds daily. I haven't been able to start taking them yet because my pulmonologist has ordered baseline reports from an audiologist; ophthalmologist; immunologist and also an EKG. It seems like it's taking forever to even get these appointments scheduled so I can start the meds. My insurance finally approved my ophthalmologist appointment this morning, but they have no opening until December. They are going to try to work me in more quickly, and I'm praying they can get me in sometime within the next week. It doesn't make that easier due to the hurricane that's going to hit Florida this week. In the meantime, I keep reading and researching bronchiectasis and MAC. I was really bummed when I learned yesterday there's no cure for it. I guess the strong antibiotics are supposed to clear it as much as possible and inhibit growth of the bacteria.
It sounds like you have a very good Pulmo. Ordering all those tests prior to starting is the safest thing to do. Not all Pulmo's take precautions like that.
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I think it's important to know what the side effects could be and have the routine tests to monitor your response to the drugs. However, there are plenty of us who tolerate the drugs with only minor side effects so don't let that scare you. It is important to take a good probiotic (at least 4 hours apart from any of the antibiotics). I take Lactobif 30 and it is working well for me.
Jarro-dophilus is another one that is often recommended in this group. Wishing you the best!
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3 ReactionsI agree with Mary. I'll add the pill schedule is important. AZ with dinner was my best move.
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3 ReactionsI 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.
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4 Reactionsjloy, 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.
-
Like -
Helpful -
Hug
4 ReactionsI 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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2 ReactionsHi Sue, A few questions, diagnosed with BE because of cough this was 2 years ago. I was given a vest.
Bronchoscopy 6 months ago showed MAI, went to ID Dr. She did not put me on the Big 3, because my symptoms were not bad, no infections, no cough, slight shortness of breath, no cavities.
I am 78, work out or walk three times a week. Meat once a week. I am also blind in one eye, scared of antibiotics. I feel good, when to start the Big 3? Signs to look for, coughing up blood, yikes. Are my lungs getting worse and me not know it? Thanks for any info you and group can give me.
-
Like -
Helpful -
Hug
2 ReactionsHello Diana, I am not a doctor, so I cannot answer the question we all ask ...,"when to start the Big 3?..." But matbe I can point you to a few resources to help.
Let's start by saying many here live for many years with a diagnosis of MAI/MAC/NTM who never get to the point where the antibiotics are required. For others, their overall symptoms and levels of infection are such that antibiotics are the immediate response. Then there is the great, gray "in between."
The experts constantly explore this subject. In 2020, guidelines for clinicians were issued, but it is pretty heavy reading:
https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf
For a more user-friendly explanation, see this YouTube Video from the National Jewish Health Patient Conference in 2022.
In addition to the vest, are you using airway clearance exercises to get the mucus out after it is loosened up? Do you use inhaled saline to make your lungs less welcoming to the bacteria?
Thank you for saying this. I told my doc about the severe itching and he ordered blood tests. I do have liver damage and anemia. So I am off the antibiotics and getting monitored so we can see my blood return to normal.
-
Like -
Helpful -
Hug
3 ReactionsI'm supposed to take the 3 meds daily. I haven't been able to start taking them yet because my pulmonologist has ordered baseline reports from an audiologist; ophthalmologist; immunologist and also an EKG. It seems like it's taking forever to even get these appointments scheduled so I can start the meds. My insurance finally approved my ophthalmologist appointment this morning, but they have no opening until December. They are going to try to work me in more quickly, and I'm praying they can get me in sometime within the next week. It doesn't make that easier due to the hurricane that's going to hit Florida this week. In the meantime, I keep reading and researching bronchiectasis and MAC. I was really bummed when I learned yesterday there's no cure for it. I guess the strong antibiotics are supposed to clear it as much as possible and inhibit growth of the bacteria.
-
Like -
Helpful -
Hug
1 ReactionIt sounds like you have a very good Pulmo. Ordering all those tests prior to starting is the safest thing to do. Not all Pulmo's take precautions like that.
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