I'm seconding what Irene said here. I have just this week started treatment - in a study called Encore which has 2 of the big 3 plus either Arikayce or placebo -- after getting recruited for the study in July. All the same baseline testing @jloy describes, plus having the sputum tested for susceptibility meaning to see if it responds to these meds. It's a lot of hurry up & wait, and like you I've learned a lot here in the meantime! These are heavy-duty meds & well worth it, but they absolutely should be looking out for any side effects. My docs tell me most people tolerate the meds fine & hopefully you will too and so will I!
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.
Jloy, do not despair! I too was scheduled to begin the Big 3 regimen last April, but put it off because of travel plans and scheduling all those baseline appointments. When I next saw my pulmonologist in August, I had girded my loins and was fully prepared to dive in and just do it - but much to my surprise, he said the last three months' sputum tests were clear of MAC and we could wait a few months to see what future tests showed!!
My doctor thought that my being very diligent about airway clearance and nebulizing at least twice daily with levalbuterol and 7% saline, exercising, and using Mucinex and NAC were key to the clear test results. I have learned so much here at Mayo Connect, particularly the importance of maintaining a routine, and feel like every morning I get a big dose of support and encouragement. And I know that, if I do have to start the Big 3 in the future, that will be of utmost importance. Best of luck to you.
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?
No, nothing other than vest was order. I take NAC, read was good for lung health. Worried lungs are getting worse without me knowing. Due to go to Pulmonary Dr soon. I think he was upset ID Dr. did not put me on the big 3. At 78 I feel great, lucky. If I felt bad, problem breathing, I would take. Just concerned and confused, Thanks.
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.
I was coughing nonstop before I started mac antibiotics. Later with time the cough became less and less intense. Of course I still cough but not much and mostly in the morning. I do cough a lot when I get an infection.
I am just starting my treatment for MAC. I was put on Azithromycin Monday, Wednesday, and Friday for my first of the three antibiotics. After the first week I started to notice joint soreness, esp in my hands. I had itchiness on arms and hands. Then I noticed a rash and severe itching on both arms.
My Pulmonary Doctor said I had an allergic reaction. Stopped the drug and I am on a regimen of prednisone to stop the inflammation and rash.
He has changed my first antibiotic to Moxifloxacin HCL 400 mg.
Has anyone else ever had this reaction to this drug?
I had taken this Azithromycin drug before in the past and nothing like this ever occurred?
I am taking NAC and a Probiotic daily .
So far I am off to a rocky start👎
I had major reactions to Ciprofloxacin it’s a Fluroquinolone class same drug as moxifloxacin. It’s left me house bound in chronic pain. Despite what doctors say this is not a rare adverse reaction these drugs have left tens of thousands of people disabled. Check out the Fluroquinolone Toxicity group’s on face book. They should only ever be prescribed if there is no other possible alternative and never given with steroids. I would also get your doctor to run regular autoimmune blood test. I don’t want anyone else to end up injured Like me. IT’s Fluroquinolone Awareness Day on the October 22nd
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.
You are lucky your pulmonologist wants all the baseline tests done, I wish I had that. I waited to get ears checked for 8 months while being treated and not sure if meds caused hearing issue or not.. If I was going to my current pulmonologist he would have gotten me an appointment earlier. Can your pulmonologist try to get you earlier appointments so you can start treatment?
I had major reactions to Ciprofloxacin it’s a Fluroquinolone class same drug as moxifloxacin. It’s left me house bound in chronic pain. Despite what doctors say this is not a rare adverse reaction these drugs have left tens of thousands of people disabled. Check out the Fluroquinolone Toxicity group’s on face book. They should only ever be prescribed if there is no other possible alternative and never given with steroids. I would also get your doctor to run regular autoimmune blood test. I don’t want anyone else to end up injured Like me. IT’s Fluroquinolone Awareness Day on the October 22nd
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I'm seconding what Irene said here. I have just this week started treatment - in a study called Encore which has 2 of the big 3 plus either Arikayce or placebo -- after getting recruited for the study in July. All the same baseline testing @jloy describes, plus having the sputum tested for susceptibility meaning to see if it responds to these meds. It's a lot of hurry up & wait, and like you I've learned a lot here in the meantime! These are heavy-duty meds & well worth it, but they absolutely should be looking out for any side effects. My docs tell me most people tolerate the meds fine & hopefully you will too and so will I!
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1 ReactionJloy, do not despair! I too was scheduled to begin the Big 3 regimen last April, but put it off because of travel plans and scheduling all those baseline appointments. When I next saw my pulmonologist in August, I had girded my loins and was fully prepared to dive in and just do it - but much to my surprise, he said the last three months' sputum tests were clear of MAC and we could wait a few months to see what future tests showed!!
My doctor thought that my being very diligent about airway clearance and nebulizing at least twice daily with levalbuterol and 7% saline, exercising, and using Mucinex and NAC were key to the clear test results. I have learned so much here at Mayo Connect, particularly the importance of maintaining a routine, and feel like every morning I get a big dose of support and encouragement. And I know that, if I do have to start the Big 3 in the future, that will be of utmost importance. Best of luck to you.
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Hug
3 ReactionsNo, nothing other than vest was order. I take NAC, read was good for lung health. Worried lungs are getting worse without me knowing. Due to go to Pulmonary Dr soon. I think he was upset ID Dr. did not put me on the big 3. At 78 I feel great, lucky. If I felt bad, problem breathing, I would take. Just concerned and confused, Thanks.
I had blood tests every month. I can’t explain why but I had no side effects with the drugs but after two years I am drug resistant to azithromycin
You know I experienced itchiness but went away
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2 ReactionsDoes any one have a lot of coughing. I cough 24/7. Doing vest and nebulizer
I was coughing nonstop before I started mac antibiotics. Later with time the cough became less and less intense. Of course I still cough but not much and mostly in the morning. I do cough a lot when I get an infection.
I had major reactions to Ciprofloxacin it’s a Fluroquinolone class same drug as moxifloxacin. It’s left me house bound in chronic pain. Despite what doctors say this is not a rare adverse reaction these drugs have left tens of thousands of people disabled. Check out the Fluroquinolone Toxicity group’s on face book. They should only ever be prescribed if there is no other possible alternative and never given with steroids. I would also get your doctor to run regular autoimmune blood test. I don’t want anyone else to end up injured Like me. IT’s Fluroquinolone Awareness Day on the October 22nd
You are lucky your pulmonologist wants all the baseline tests done, I wish I had that. I waited to get ears checked for 8 months while being treated and not sure if meds caused hearing issue or not.. If I was going to my current pulmonologist he would have gotten me an appointment earlier. Can your pulmonologist try to get you earlier appointments so you can start treatment?
what is the connection with Auto Immune and that class of antibiotics?