Thank you for your thoughts. I am also new to this blog and will be going to duke for opinion and discussing starting treatment for mac. Would like to hear from those who have gone through the treatment to learn how difficult it was or did it affect your everyday life. Can you travel or is that something that can be difficult.
I want to hear from you so far from my infectious disease dr its all difficult and terrible. Thank you for any thoughts on this. Miriam
Good morning Miriam, you have found a great place to address your concerns here on Connect, since we have so many people who have had every conceivable treatment regimen for MAC. Not every case is immediately treated with antibiotics, some can be managed with rigorous airway clearance and nebulizing 7% saline.
When I first started treatment, I was quite ill with both MAC & pseudomonas, and very scared to begin treatment, then I found this wonderful group. They taught me many strategies for managing the disease and meds, and I got help from my pulmonologist's nurse as well.
Once I felt a little better, I traveled throughout 18 months of treatment with the Big 3, but more slowly due to the fatigue and other side effects. I also continued my volunteer activities, and helping with my small grandson. I can still do all of that with my airway clearance routine - I just need to reserve about 30 minutes once or twice a day to do it.
I am glad you are having a consult at Duke - are you making a list of questions to ask?
Hi Sue, I was diagnosed with MAC lung disease earlier this year. I had an upper left lobectomy in June, mostly because they thought the infection was cancer and also because of the delicate location on my lung. I also had mild bronchiectasis. I have just started the azithromycin and will add rifampin later this week, with ethambutol to follow in two weeks. I am very worried about side effects. I am thinking about retiring (I'm 65) now instead of at age 70 so I can rest more. I am self-employed and really cannot take days off for illness. I'm just hoping the side effects aren't bad but honestly I am "on" and in front of people one-to-one all day for my work and I can't imagine cognitive slips or diarrhea and vomiting working well for me. I'm sure everyone else feels the same. Do I need to take my days and live them because there may be fewer and they'll be more challenging?Thank you, Sue, for moderating, and all for reading.
The treatment for MAC is onerous for many people, but if you can stick with it to "knock down" the infection you can have a pretty normal life.
When I was having issues taking the 3 antibiotics, I found several things that helped me cope.
First, nausea was my companion - I learned I could take all 3 meds at night, just before bed, with a small amount of starchy food and go to sleep. While not ideal, it was my best time of day.
Second, my appetite was nonexistent, so I forced myself to eat a tiny amount of high quality food every 1-2 hours (like 1 oz of cheese, 1/4 c of cashews, 1/2 a protein drink)
Third, a good probiotic.
I had a lot of fatigue, so I don't know if I could have managed to work full time, but I did about 3 full days a week between volunteer work and grandchild care. Is there any chance you can cut back on work without retiring?
Sue
Good morning Miriam, you have found a great place to address your concerns here on Connect, since we have so many people who have had every conceivable treatment regimen for MAC. Not every case is immediately treated with antibiotics, some can be managed with rigorous airway clearance and nebulizing 7% saline.
When I first started treatment, I was quite ill with both MAC & pseudomonas, and very scared to begin treatment, then I found this wonderful group. They taught me many strategies for managing the disease and meds, and I got help from my pulmonologist's nurse as well.
Once I felt a little better, I traveled throughout 18 months of treatment with the Big 3, but more slowly due to the fatigue and other side effects. I also continued my volunteer activities, and helping with my small grandson. I can still do all of that with my airway clearance routine - I just need to reserve about 30 minutes once or twice a day to do it.
I am glad you are having a consult at Duke - are you making a list of questions to ask?
Thank you Sue so much for your response. If we decide to start treatment i will definitely be asking for help to manage symptoms.
I do have lots of questions for my visit. My concern right now is that i am having symptoms. Besides fatigue and night sweats the one i am most worried is my shortness of breath that has started recently when i excert myself going up stairs and walking up hills, this is new. I walk when i play golf and it has become a problem when i go up hills. So these are issues that i will be discussing. Will keep you updated. I am hoping to get the right info to make my decision.
Thanks miriam
I was one of those odd people that it didn't cause many side effects and I carried on with every day life. With that being said, I'm glad I'm off of them but think maybe my MAC is back. I do a spudem test next month. I exercised daily and I really think that was the key to feeling good.
Good morning Miriam, you have found a great place to address your concerns here on Connect, since we have so many people who have had every conceivable treatment regimen for MAC. Not every case is immediately treated with antibiotics, some can be managed with rigorous airway clearance and nebulizing 7% saline.
When I first started treatment, I was quite ill with both MAC & pseudomonas, and very scared to begin treatment, then I found this wonderful group. They taught me many strategies for managing the disease and meds, and I got help from my pulmonologist's nurse as well.
Once I felt a little better, I traveled throughout 18 months of treatment with the Big 3, but more slowly due to the fatigue and other side effects. I also continued my volunteer activities, and helping with my small grandson. I can still do all of that with my airway clearance routine - I just need to reserve about 30 minutes once or twice a day to do it.
I am glad you are having a consult at Duke - are you making a list of questions to ask?
Does anyone have a suggested list of questions to ask the Dr at Mayo? I'm trying to treat myself without going on the big 3. I hope not to have to go on them, but perhaps that will be the only choice.
Does anyone have a suggested list of questions to ask the Dr at Mayo? I'm trying to treat myself without going on the big 3. I hope not to have to go on them, but perhaps that will be the only choice.
I could think and write all day, and probably miss something. Here is a starting point I found on the ntminfo.org web site:
QUESTIONS TO ASK YOUR DOCTOR
Sometimes it is helpful to have a list of questions so you don’t forget. It might
help to bring someone with you to your appointment if you are especially
anxious. These questions were written from a patient’s perspective and are not
intended as medical advice.
1. What strain(s) of mycobacteria do I have? Where in my lungs is the
infection located?
2. Was drug sensitivity testing performed? If so, what were the results?
If not, can and should it be done?
3. What drugs will I be taking? What is the dosing level for each medication?
Can and should therapeutic drug levels be checked?
4. When and how do I take my medication?
5. How long do you expect me to be on the medications?
6. What side effects will I be likely to have? Which side effects should be
reported immediately? Do you have any suggestions for coping with side
effects?
7. Will IV drugs be necessary?
8. Will I also need inhalers?
9. How often will I have:
a. Follow up appointments with you?
b. X-rays/CT scans?
c. Lab work? What kind?
d. Hearing or vision tests? (Try to have hearing and vision tests done
before starting your medications so they will have a baseline by which
to judge any changes.)
e. Sputum cultures?
10. What other monitoring will I need?
11. Should I use an airway clearance device? How often?
12. Can I still take over the counter medicines/vitamins/supplements? (Be
sure to tell your doctor about ALL nutritional supplements, herbs, or over
the counter products that you take. These can interact with your medicines
or decrease their effectiveness.)
13. Would I be a candidate for surgery? Why or why not?
14. What if I lose my appetite?
15. What if I feel depressed?
16. Can I exercise? What kind of exercise?
17. What precautions should I take? What activities should I avoid?
Some of these may apply to you, others not. Just pick and choose what you would like to ask. I will add these, to me very important ones:
1) Is there an alternative we can try before the antibiotics, such as rigorous airway clearance with nebulized saline & close monitoring?
2) Will I have quick access to a PA, respiratory therapist or knowledgeable RN to answer my questions if I start the medications?
Does this help? I sure wish I had known what to ask when I was diagnosed.
Good luck with your appointment - let me know what you learn, please
I could think and write all day, and probably miss something. Here is a starting point I found on the ntminfo.org web site:
QUESTIONS TO ASK YOUR DOCTOR
Sometimes it is helpful to have a list of questions so you don’t forget. It might
help to bring someone with you to your appointment if you are especially
anxious. These questions were written from a patient’s perspective and are not
intended as medical advice.
1. What strain(s) of mycobacteria do I have? Where in my lungs is the
infection located?
2. Was drug sensitivity testing performed? If so, what were the results?
If not, can and should it be done?
3. What drugs will I be taking? What is the dosing level for each medication?
Can and should therapeutic drug levels be checked?
4. When and how do I take my medication?
5. How long do you expect me to be on the medications?
6. What side effects will I be likely to have? Which side effects should be
reported immediately? Do you have any suggestions for coping with side
effects?
7. Will IV drugs be necessary?
8. Will I also need inhalers?
9. How often will I have:
a. Follow up appointments with you?
b. X-rays/CT scans?
c. Lab work? What kind?
d. Hearing or vision tests? (Try to have hearing and vision tests done
before starting your medications so they will have a baseline by which
to judge any changes.)
e. Sputum cultures?
10. What other monitoring will I need?
11. Should I use an airway clearance device? How often?
12. Can I still take over the counter medicines/vitamins/supplements? (Be
sure to tell your doctor about ALL nutritional supplements, herbs, or over
the counter products that you take. These can interact with your medicines
or decrease their effectiveness.)
13. Would I be a candidate for surgery? Why or why not?
14. What if I lose my appetite?
15. What if I feel depressed?
16. Can I exercise? What kind of exercise?
17. What precautions should I take? What activities should I avoid?
Some of these may apply to you, others not. Just pick and choose what you would like to ask. I will add these, to me very important ones:
1) Is there an alternative we can try before the antibiotics, such as rigorous airway clearance with nebulized saline & close monitoring?
2) Will I have quick access to a PA, respiratory therapist or knowledgeable RN to answer my questions if I start the medications?
Does this help? I sure wish I had known what to ask when I was diagnosed.
Good luck with your appointment - let me know what you learn, please
I was one of those odd people that it didn't cause many side effects and I carried on with every day life. With that being said, I'm glad I'm off of them but think maybe my MAC is back. I do a spudem test next month. I exercised daily and I really think that was the key to feeling good.
The treatment for MAC is onerous for many people, but if you can stick with it to "knock down" the infection you can have a pretty normal life.
When I was having issues taking the 3 antibiotics, I found several things that helped me cope.
First, nausea was my companion - I learned I could take all 3 meds at night, just before bed, with a small amount of starchy food and go to sleep. While not ideal, it was my best time of day.
Second, my appetite was nonexistent, so I forced myself to eat a tiny amount of high quality food every 1-2 hours (like 1 oz of cheese, 1/4 c of cashews, 1/2 a protein drink)
Third, a good probiotic.
I had a lot of fatigue, so I don't know if I could have managed to work full time, but I did about 3 full days a week between volunteer work and grandchild care. Is there any chance you can cut back on work without retiring?
Sue
Sue, it was helpful to read about your experience taking the big three antibiotics for MAC; thank you. I like the idea of eating small quantities of quality food throughout the day. When I read about the side effects I freaked out. I had a hard time starting rifampin tonight because of what I'm reading. Does life ever go back to normal or am I in for a lifetime of managing this disease? I think my pulmonologist stated the most optimistic outcome to get me on board with treatment. I thought it needed to be eliminated but after doing lots of reading it seems "subdued" is all I can hope for.
Sue, it was helpful to read about your experience taking the big three antibiotics for MAC; thank you. I like the idea of eating small quantities of quality food throughout the day. When I read about the side effects I freaked out. I had a hard time starting rifampin tonight because of what I'm reading. Does life ever go back to normal or am I in for a lifetime of managing this disease? I think my pulmonologist stated the most optimistic outcome to get me on board with treatment. I thought it needed to be eliminated but after doing lots of reading it seems "subdued" is all I can hope for.
Good morning. I had my ct yesterday and the got the report. I am waiting for my pulmonologist to call. (Waiting is a pain). We were looking at a nodule in the right upper lobe. It has now grown it did not disappear like my doctor thought would happen. With an additional new one. Also i have increasing nodular opacities in the anterior right upper, inferior right middle. Multiple scattered tree in bud type nodular opacities within the periphery of both lungs which some have increased and some stable in the last 3 mo. Radiologist says is likely atypical MAI. So since my positive cultures have come during same time period. Need to wait for dr but i feel that this getting worst and having physical symptoms. Taking all of this to duke on the 10th. This infection cannot be good for my lungs. I had to decide if to treat or not and wait. Unless doctor tells me otherwise i think i will treat. Why would i wait to let it get worst. Have any of you been in this situation. Please would like to hear from you. Thanks miriam
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Good morning Miriam, you have found a great place to address your concerns here on Connect, since we have so many people who have had every conceivable treatment regimen for MAC. Not every case is immediately treated with antibiotics, some can be managed with rigorous airway clearance and nebulizing 7% saline.
When I first started treatment, I was quite ill with both MAC & pseudomonas, and very scared to begin treatment, then I found this wonderful group. They taught me many strategies for managing the disease and meds, and I got help from my pulmonologist's nurse as well.
Once I felt a little better, I traveled throughout 18 months of treatment with the Big 3, but more slowly due to the fatigue and other side effects. I also continued my volunteer activities, and helping with my small grandson. I can still do all of that with my airway clearance routine - I just need to reserve about 30 minutes once or twice a day to do it.
I am glad you are having a consult at Duke - are you making a list of questions to ask?
Sue
-
Like -
Helpful -
Hug
1 ReactionThe treatment for MAC is onerous for many people, but if you can stick with it to "knock down" the infection you can have a pretty normal life.
When I was having issues taking the 3 antibiotics, I found several things that helped me cope.
First, nausea was my companion - I learned I could take all 3 meds at night, just before bed, with a small amount of starchy food and go to sleep. While not ideal, it was my best time of day.
Second, my appetite was nonexistent, so I forced myself to eat a tiny amount of high quality food every 1-2 hours (like 1 oz of cheese, 1/4 c of cashews, 1/2 a protein drink)
Third, a good probiotic.
I had a lot of fatigue, so I don't know if I could have managed to work full time, but I did about 3 full days a week between volunteer work and grandchild care. Is there any chance you can cut back on work without retiring?
Sue
-
Like -
Helpful -
Hug
2 ReactionsThank you Sue so much for your response. If we decide to start treatment i will definitely be asking for help to manage symptoms.
I do have lots of questions for my visit. My concern right now is that i am having symptoms. Besides fatigue and night sweats the one i am most worried is my shortness of breath that has started recently when i excert myself going up stairs and walking up hills, this is new. I walk when i play golf and it has become a problem when i go up hills. So these are issues that i will be discussing. Will keep you updated. I am hoping to get the right info to make my decision.
Thanks miriam
I was one of those odd people that it didn't cause many side effects and I carried on with every day life. With that being said, I'm glad I'm off of them but think maybe my MAC is back. I do a spudem test next month. I exercised daily and I really think that was the key to feeling good.
-
Like -
Helpful -
Hug
1 ReactionDoes anyone have a suggested list of questions to ask the Dr at Mayo? I'm trying to treat myself without going on the big 3. I hope not to have to go on them, but perhaps that will be the only choice.
I could think and write all day, and probably miss something. Here is a starting point I found on the ntminfo.org web site:
QUESTIONS TO ASK YOUR DOCTOR
Sometimes it is helpful to have a list of questions so you don’t forget. It might
help to bring someone with you to your appointment if you are especially
anxious. These questions were written from a patient’s perspective and are not
intended as medical advice.
1. What strain(s) of mycobacteria do I have? Where in my lungs is the
infection located?
2. Was drug sensitivity testing performed? If so, what were the results?
If not, can and should it be done?
3. What drugs will I be taking? What is the dosing level for each medication?
Can and should therapeutic drug levels be checked?
4. When and how do I take my medication?
5. How long do you expect me to be on the medications?
6. What side effects will I be likely to have? Which side effects should be
reported immediately? Do you have any suggestions for coping with side
effects?
7. Will IV drugs be necessary?
8. Will I also need inhalers?
9. How often will I have:
a. Follow up appointments with you?
b. X-rays/CT scans?
c. Lab work? What kind?
d. Hearing or vision tests? (Try to have hearing and vision tests done
before starting your medications so they will have a baseline by which
to judge any changes.)
e. Sputum cultures?
10. What other monitoring will I need?
11. Should I use an airway clearance device? How often?
12. Can I still take over the counter medicines/vitamins/supplements? (Be
sure to tell your doctor about ALL nutritional supplements, herbs, or over
the counter products that you take. These can interact with your medicines
or decrease their effectiveness.)
13. Would I be a candidate for surgery? Why or why not?
14. What if I lose my appetite?
15. What if I feel depressed?
16. Can I exercise? What kind of exercise?
17. What precautions should I take? What activities should I avoid?
Some of these may apply to you, others not. Just pick and choose what you would like to ask. I will add these, to me very important ones:
1) Is there an alternative we can try before the antibiotics, such as rigorous airway clearance with nebulized saline & close monitoring?
2) Will I have quick access to a PA, respiratory therapist or knowledgeable RN to answer my questions if I start the medications?
Does this help? I sure wish I had known what to ask when I was diagnosed.
Good luck with your appointment - let me know what you learn, please
Sue
-
Like -
Helpful -
Hug
7 ReactionsThis is truly so helpful, I'm glad that I asked and got an answer from a seasoned mentor. Thank you.
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Helpful -
Hug
3 ReactionsThanks for your thoughts!
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Helpful -
Hug
1 ReactionSue, it was helpful to read about your experience taking the big three antibiotics for MAC; thank you. I like the idea of eating small quantities of quality food throughout the day. When I read about the side effects I freaked out. I had a hard time starting rifampin tonight because of what I'm reading. Does life ever go back to normal or am I in for a lifetime of managing this disease? I think my pulmonologist stated the most optimistic outcome to get me on board with treatment. I thought it needed to be eliminated but after doing lots of reading it seems "subdued" is all I can hope for.
Good morning. I had my ct yesterday and the got the report. I am waiting for my pulmonologist to call. (Waiting is a pain). We were looking at a nodule in the right upper lobe. It has now grown it did not disappear like my doctor thought would happen. With an additional new one. Also i have increasing nodular opacities in the anterior right upper, inferior right middle. Multiple scattered tree in bud type nodular opacities within the periphery of both lungs which some have increased and some stable in the last 3 mo. Radiologist says is likely atypical MAI. So since my positive cultures have come during same time period. Need to wait for dr but i feel that this getting worst and having physical symptoms. Taking all of this to duke on the 10th. This infection cannot be good for my lungs. I had to decide if to treat or not and wait. Unless doctor tells me otherwise i think i will treat. Why would i wait to let it get worst. Have any of you been in this situation. Please would like to hear from you. Thanks miriam