@sueinmn My pulmonologist ordered one last year but I haven’t done a repeat sputum sample because I had trouble collecting it and when I finally succeeded, the lab was closed. I haven’t had gross sputum for several months, mostly clear if that makes a difference?I can ask her for new orders and try again.
No I have not tried 7% saline as it was not suggested. Is this something for which I need a prescription? I will ask her about it in April when I I see her following CT scan. Thanks
@chisintexas I forgot to add, try to get the pulmonologist to prescribe a nebulizer, albuterol neb and saline - sometimes you can get reimbursed by insurance that way.
Thank you Don, I am 20 days on the meds now and down almost 6 pounds! I am so nauseous it is hard to eat. I am not a complainer so this is such a new experience. I don't understand what the nebulizing 7% saline is but am trying to find it on the internet. Any information or thoughts on what i should get to try that would be appreciated. i have a call into my doctor now as a neighbor said there are anti-nausea meds? I need something if I'm going to do this for the next year! So thankful I found this site for a better understanding of what is going on! Ina
@ina When I was first put on the Rifampin, Ethambutol and Azithromycin, my body reacted as yours has. Then my primary care doctor prescribed Mirtazapine, which took away the nausea and gave me back my appetite. After 3 years on the drug protocol, I am clear of the MAC!
A chronic infection, which is a group of bacteria commonly found in soil and water. It primarily affects individuals with weakened immune systems or existing lung conditions, leading to symptoms like chronic cough, fatigue, and shortness of breath. https://connect.mayoclinic.org/discussion/lets-talk-about-using-acronyms/
Hi, I was diagnosed with MAC about 10 years ago and the doctor just started me on the 3 drug cocktail of azithromycin, rifampin and ethambutol every day. I have only been on the drugs about 19 days but the side effects have all but incapacitated me. Does anyone know if the body adjusts to the drugs and how long it takes before the drugs work? My doctors never mentioned any side effects, only said the course of taking the medicine was 9 months to a year. Thank you!
@ina I had same side effects when I started taking these 3 drugs last September. The ethembutal was the worst, as it made me extremely nauseous and lethargic in addition to muscle aches and pains, and making my arthritis worse. I had to stop the ethembutal after 6 weeks as I could not tolerate it. I am just taking the other 2 drugs and not sure if it’s helping. Had sputum test last month and I’m still growing the bacteria! Doctor told me I have to stay on these 2 for several more months. Your not alone in feeling these side effects, it hang in there!
PS
@ina I had same side effects when I started taking these 3 drugs last September. The ethembutal was the worst, as it made me extremely nauseous and lethargic in addition to muscle aches and pains, and making my arthritis worse. I had to stop the ethembutal after 6 weeks as I could not tolerate it. I am just taking the other 2 drugs and not sure if it’s helping. Had sputum test last month and I’m still growing the bacteria! Doctor told me I have to stay on these 2 for several more months. Your not alone in feeling these side effects, it hang in there!
PS
Has your doctor suggested adding another medication like Arikayce to help you clear the infection?
Are you doing daily airway clearance and using saline nebs? These can both help you clear the infection.
I am coming up on 10yrs since diagnosed with MAC. I took the 3 antibiotics mentioned for 15 months and had very little side effects. I have tested negative since. My doctor has suggested the new drug Brinsupri since I also deal with Bronchiectasis so I went to see my pulmonologist who agreed. Now I am waiting to see if insurance will approve.
Hi I just got diagnosed with MAC I have no symptoms they caught it because I had a cardiac calcium scan. I also have rheumatoid arthritis for 17 years i am on methotrexate injections once a week I saw a infectious disease doctor who said that they do t treatment my disease unless it show signs that im ill or its starts to get larger in my lungs so I have to do catscans every 3 months for a while to see if its active or they don't treat it. I'm on a very strict plant based diet for my gut health because of my disease rheumatoid arthritis I take probiotics and probiotics Kiefer suaerkruat etc. I am so scared what this treatment when it starts what it will do to me and my gut. I'm very glad I found this forum.
Wow! That is encouraging! May I ask how often you do the nebulizer? I discovered I do have one that I was prescribed when I had a bout with pneumonia a while back but my doctor has never suggested it be used to help treat MAC. Anything that will attack the little bug I'm all in for!
@ina I use my nebulizer twice a day - once in the morning (thats when I can dislodge alot of mucus and expel it) and then again at night before bed. So far - for me - it has been a game changer.
Hi I just got diagnosed with MAC I have no symptoms they caught it because I had a cardiac calcium scan. I also have rheumatoid arthritis for 17 years i am on methotrexate injections once a week I saw a infectious disease doctor who said that they do t treatment my disease unless it show signs that im ill or its starts to get larger in my lungs so I have to do catscans every 3 months for a while to see if its active or they don't treat it. I'm on a very strict plant based diet for my gut health because of my disease rheumatoid arthritis I take probiotics and probiotics Kiefer suaerkruat etc. I am so scared what this treatment when it starts what it will do to me and my gut. I'm very glad I found this forum.
@dawnlorello Are you seeing a pulmonologist familiar with bronchiectasis? People with rheumatoid arthritis can develop this condition as well.
How was your MAC infection diagnosed? Did you produce a sputum culture, or did the y do a bronchoscopy? The scan can indicate possible MAC, but a culture of mucus from the lungs is required to confirm the diagnosis.
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@chisintexas I forgot to add, try to get the pulmonologist to prescribe a nebulizer, albuterol neb and saline - sometimes you can get reimbursed by insurance that way.
@ina When I was first put on the Rifampin, Ethambutol and Azithromycin, my body reacted as yours has. Then my primary care doctor prescribed Mirtazapine, which took away the nausea and gave me back my appetite. After 3 years on the drug protocol, I am clear of the MAC!
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1 ReactionWhat is MAC
@flettorina MAC = Mycobacterium avium complex
A chronic infection, which is a group of bacteria commonly found in soil and water. It primarily affects individuals with weakened immune systems or existing lung conditions, leading to symptoms like chronic cough, fatigue, and shortness of breath.
https://connect.mayoclinic.org/discussion/lets-talk-about-using-acronyms/
@ina I had same side effects when I started taking these 3 drugs last September. The ethembutal was the worst, as it made me extremely nauseous and lethargic in addition to muscle aches and pains, and making my arthritis worse. I had to stop the ethembutal after 6 weeks as I could not tolerate it. I am just taking the other 2 drugs and not sure if it’s helping. Had sputum test last month and I’m still growing the bacteria! Doctor told me I have to stay on these 2 for several more months. Your not alone in feeling these side effects, it hang in there!
PS
Has your doctor suggested adding another medication like Arikayce to help you clear the infection?
Are you doing daily airway clearance and using saline nebs? These can both help you clear the infection.
I am coming up on 10yrs since diagnosed with MAC. I took the 3 antibiotics mentioned for 15 months and had very little side effects. I have tested negative since. My doctor has suggested the new drug Brinsupri since I also deal with Bronchiectasis so I went to see my pulmonologist who agreed. Now I am waiting to see if insurance will approve.
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Hug
3 ReactionsHi I just got diagnosed with MAC I have no symptoms they caught it because I had a cardiac calcium scan. I also have rheumatoid arthritis for 17 years i am on methotrexate injections once a week I saw a infectious disease doctor who said that they do t treatment my disease unless it show signs that im ill or its starts to get larger in my lungs so I have to do catscans every 3 months for a while to see if its active or they don't treat it. I'm on a very strict plant based diet for my gut health because of my disease rheumatoid arthritis I take probiotics and probiotics Kiefer suaerkruat etc. I am so scared what this treatment when it starts what it will do to me and my gut. I'm very glad I found this forum.
@ina I use my nebulizer twice a day - once in the morning (thats when I can dislodge alot of mucus and expel it) and then again at night before bed. So far - for me - it has been a game changer.
@dawnlorello Are you seeing a pulmonologist familiar with bronchiectasis? People with rheumatoid arthritis can develop this condition as well.
How was your MAC infection diagnosed? Did you produce a sputum culture, or did the y do a bronchoscopy? The scan can indicate possible MAC, but a culture of mucus from the lungs is required to confirm the diagnosis.