Hi Sue, I started the Big 3 about 10 days ago and began having tinnitis after only a week of being on the meds... my ID said to stop taking all of the meds until I see my ENT next week. Just wondering what your experience has been with the tinnitis, did it start early after starting the meds and did it get worse with time or did the tinnitis stay about the same? I have a consult with Mayo next month so I'll see what they say as well...other than the ears I have had no issues with the meds
I have had tinnitus most of my life, maybe a little worse since the antibiotics, but hard to say. My vision and hearing were closely watched throughout the meds with annual followup now. Hearing loss seems to be progressing as expected for my age and history. Has anyone else had to stop the meds due to tinnitus?
Sue
I have had tinnitus most of my life, maybe a little worse since the antibiotics, but hard to say. My vision and hearing were closely watched throughout the meds with annual followup now. Hearing loss seems to be progressing as expected for my age and history. Has anyone else had to stop the meds due to tinnitus?
Sue
I also had and now have tinnitus from the meds. They did not stop the meds but I did get my hearing checked every 6 months. I also had in-depth vision testing every 6 months. The doctors were more concerned about that. I've been off the meds for about 6 months and I'm hearing the ringing as I type.
I have had tinnitus most of my life, maybe a little worse since the antibiotics, but hard to say. My vision and hearing were closely watched throughout the meds with annual followup now. Hearing loss seems to be progressing as expected for my age and history. Has anyone else had to stop the meds due to tinnitus?
Sue
Miriam, this sounds like a scary time. I hope you have a plan for treatment and start to feel confident about the path forward very soon. My best to you.
Hello
I wanted to follow up with you all. I started the 3 meds two weeks ago and so far so good. I was so scared. I had some nauseousness with Azithromycin the first day but it has gone away. The only thing i notice is metallic taste in my mouth with this med. Doctor says its rare but its ok. I eat ginger candy and it helps. The other two are fine for now. Praying that it continues as i go through the treatment. Prayers are working!!!
I hope i see improvements of my symptoms as i progress with the treatments. Fatigue is a big one.
Thank you all for your thoughts and experiences. It really helps to hear how you all handle this.
Thanks miriam
Thanks for sharing your experience with this, I'm seeing the ENT and ID next week and I'm hoping to try an alternative med, good to hear there are options... thanks!
Hello
I wanted to follow up with you all. I started the 3 meds two weeks ago and so far so good. I was so scared. I had some nauseousness with Azithromycin the first day but it has gone away. The only thing i notice is metallic taste in my mouth with this med. Doctor says its rare but its ok. I eat ginger candy and it helps. The other two are fine for now. Praying that it continues as i go through the treatment. Prayers are working!!!
I hope i see improvements of my symptoms as i progress with the treatments. Fatigue is a big one.
Thank you all for your thoughts and experiences. It really helps to hear how you all handle this.
Thanks miriam
Hi everyone. I am an RN and have had Bronchiectasis with MAC for several years now. I also have Rheumatoid Arthritis. I am retired and right after I retired my husband was diagnosed with lung cancer and died in 5 1/2 months. My symptoms are getting worse. I'm short of breath alot but dread starting the Big 3. My pulmonologist said I would have to take all 3 everyday for 2 years. I don't know what kind of quality of life I would have. This past summer/fall they thought I had lung cancer. Even the PET scan said probably bronchogenic carcinoma but the lung biopsy showed a Caseating granuloma. Please any suggestions or support would be highly appreciated. I live in Central Florida and thought about making an appointment with Mayo in Jacksonville but don't know if they would offer anything else other than what my pulmonologist is offering or the Big 3. Thank you.
Hi everyone. I am an RN and have had Bronchiectasis with MAC for several years now. I also have Rheumatoid Arthritis. I am retired and right after I retired my husband was diagnosed with lung cancer and died in 5 1/2 months. My symptoms are getting worse. I'm short of breath alot but dread starting the Big 3. My pulmonologist said I would have to take all 3 everyday for 2 years. I don't know what kind of quality of life I would have. This past summer/fall they thought I had lung cancer. Even the PET scan said probably bronchogenic carcinoma but the lung biopsy showed a Caseating granuloma. Please any suggestions or support would be highly appreciated. I live in Central Florida and thought about making an appointment with Mayo in Jacksonville but don't know if they would offer anything else other than what my pulmonologist is offering or the Big 3. Thank you.
Hi everyone. I am an RN and have had Bronchiectasis with MAC for several years now. I also have Rheumatoid Arthritis. I am retired and right after I retired my husband was diagnosed with lung cancer and died in 5 1/2 months. My symptoms are getting worse. I'm short of breath alot but dread starting the Big 3. My pulmonologist said I would have to take all 3 everyday for 2 years. I don't know what kind of quality of life I would have. This past summer/fall they thought I had lung cancer. Even the PET scan said probably bronchogenic carcinoma but the lung biopsy showed a Caseating granuloma. Please any suggestions or support would be highly appreciated. I live in Central Florida and thought about making an appointment with Mayo in Jacksonville but don't know if they would offer anything else other than what my pulmonologist is offering or the Big 3. Thank you.
Cindy, this is truly a tough diagnosis to hear - all of us were overwhelmed at first, but also relieved to have a name for what was making us so sick.
So, you don't say what level of experience that your pulmonologist has with treating MAC, but it is a fairly rare disease, and many do not treat it frequently.
The standard protocol for treatment is the Big 3 three times each week for at least a year. There can be times, for example treating M.abscessus, when daily dosing happens from the start. I have a few questions.
Do you know which variety of NTM you have? Did the lung culture include colony count and antibiotic sensitivity testing? Is your pulmonologist working together with an infectious disease doc? Did you ask why you need the drugs daily?
If the answers are that the pulmo did not explain, I would seek answers there first, and if you don't get a good feeling, try Mayo or National Jewish Health in Denver or another lung center.
Because you are under treatment for RA, you need to confirm the compatibility with continued steroid and Levaquin use with the antibiotics. My daughter has been transitioned from steroids to a biologic plus Methotrexate to spare her lungs, which are scarred by lifelong asthma plus bronchiectasis (but no MAC)
Let me know what you have learned. After 9 months of treatment, I had to find a new pulmo who was willing tyto answer my questions and work with me, not dictate to me.
I usually try not to repeat myself, but much of this post is a copy.
First of all, there are lots of things you can do except wait. And some of them may slow the progress of the infection in your lungs enough so you "watch and wait" indefinitely without antibiotics. That is not a promise, only a possibility - each of us is different.
I was on the Big 3 for a year and a half, treating and tolerating the side effects as long as I could, before I told my ID and pulmonologist I couldn't do it any longer, even though I was still positive for MAC. They did a CT, which showed improvement,
but not complete clearance, and reached out to National Jewish Health to consult.
In December 2019, I went off the meds, and onto the following routine:
Airway clearance - nebulized 7% saline solution (7% has been shown to also fight the growth of MAC, but lower concentrations can also help thin the mucus & "tickle" your lungs to move mucus) followed by coughing, using my Aerobika if needed. At first twice a day, now once a day unless congested or having asthma problems (then I add levalbuterol neb too)
Anti-mucolytics - the best known is guaifenesin - Mucinex 600 LA (without a decongestant) is what I have been using for 35 years. Recent research in Cystic Fibrosis had also shown that N acetyl cysteine (NAC) is useful to thin mucus, so I also use 600mg twice a day.
Liquid - lots of it, especially water. I also drink and herbal tea called Breathe Easy by Traditional Medicinals, especially in cooll weather.
Healthy diet, moderate exercise and rest.
I have had only one exacerbation that was treated with increased nebs & steroids. My CT scan at 18 month showed no changes. Two weeks ago we caught a bronchial virus and I didn't even get bronchitis - a first for me in over 20 years, so I guess my routine is working.
Do you have an airway clearance routine? With bronchiectasis, asthma or COPD, our lungs don't clear mucus properly, providing a breeding ground for bacteria. So even when we don't feel congested, we need to clear it out ourselves. As I write this, I am sitting here "puffin' the pipe" and coughing!
I follow your posts because you write from experience besides all your reading.So you have responded to me before.As a reminder I was diagnosed with Bronchiectasis and MAC 2015 due to a bleed. I delayed treatment of Big Three until 11/21.Terrible side effects and a fall led to discontinuance.I faithfully follow airway clearance neb 3% twice a day(got a bleed from7%.) Also do the Vest twice a day.I exercise daily. Working with my third pulmonologist.Also visited The CF center at Colombia Presbeterian.
So why this post, I am losing weight. I am looking for suggestions. I am not good at a few little meals a day.
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I have had tinnitus most of my life, maybe a little worse since the antibiotics, but hard to say. My vision and hearing were closely watched throughout the meds with annual followup now. Hearing loss seems to be progressing as expected for my age and history. Has anyone else had to stop the meds due to tinnitus?
Sue
I also had and now have tinnitus from the meds. They did not stop the meds but I did get my hearing checked every 6 months. I also had in-depth vision testing every 6 months. The doctors were more concerned about that. I've been off the meds for about 6 months and I'm hearing the ringing as I type.
@sueinmn The tinnitus was worse for me on azithromycin. With a switch to clarithromycin it has been much less in severity and frequency. @irene5
Hello
I wanted to follow up with you all. I started the 3 meds two weeks ago and so far so good. I was so scared. I had some nauseousness with Azithromycin the first day but it has gone away. The only thing i notice is metallic taste in my mouth with this med. Doctor says its rare but its ok. I eat ginger candy and it helps. The other two are fine for now. Praying that it continues as i go through the treatment. Prayers are working!!!
I hope i see improvements of my symptoms as i progress with the treatments. Fatigue is a big one.
Thank you all for your thoughts and experiences. It really helps to hear how you all handle this.
Thanks miriam
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2 ReactionsThanks for sharing your experience with this, I'm seeing the ENT and ID next week and I'm hoping to try an alternative med, good to hear there are options... thanks!
That's good news Miriam!
Hi everyone. I am an RN and have had Bronchiectasis with MAC for several years now. I also have Rheumatoid Arthritis. I am retired and right after I retired my husband was diagnosed with lung cancer and died in 5 1/2 months. My symptoms are getting worse. I'm short of breath alot but dread starting the Big 3. My pulmonologist said I would have to take all 3 everyday for 2 years. I don't know what kind of quality of life I would have. This past summer/fall they thought I had lung cancer. Even the PET scan said probably bronchogenic carcinoma but the lung biopsy showed a Caseating granuloma. Please any suggestions or support would be highly appreciated. I live in Central Florida and thought about making an appointment with Mayo in Jacksonville but don't know if they would offer anything else other than what my pulmonologist is offering or the Big 3. Thank you.
I also take Prednisone 5 mg twice a day and Levoquin 500 mg three times a week.
Cindy, this is truly a tough diagnosis to hear - all of us were overwhelmed at first, but also relieved to have a name for what was making us so sick.
So, you don't say what level of experience that your pulmonologist has with treating MAC, but it is a fairly rare disease, and many do not treat it frequently.
The standard protocol for treatment is the Big 3 three times each week for at least a year. There can be times, for example treating M.abscessus, when daily dosing happens from the start. I have a few questions.
Do you know which variety of NTM you have? Did the lung culture include colony count and antibiotic sensitivity testing? Is your pulmonologist working together with an infectious disease doc? Did you ask why you need the drugs daily?
If the answers are that the pulmo did not explain, I would seek answers there first, and if you don't get a good feeling, try Mayo or National Jewish Health in Denver or another lung center.
Because you are under treatment for RA, you need to confirm the compatibility with continued steroid and Levaquin use with the antibiotics. My daughter has been transitioned from steroids to a biologic plus Methotrexate to spare her lungs, which are scarred by lifelong asthma plus bronchiectasis (but no MAC)
Let me know what you have learned. After 9 months of treatment, I had to find a new pulmo who was willing tyto answer my questions and work with me, not dictate to me.
Sue
I follow your posts because you write from experience besides all your reading.So you have responded to me before.As a reminder I was diagnosed with Bronchiectasis and MAC 2015 due to a bleed. I delayed treatment of Big Three until 11/21.Terrible side effects and a fall led to discontinuance.I faithfully follow airway clearance neb 3% twice a day(got a bleed from7%.) Also do the Vest twice a day.I exercise daily. Working with my third pulmonologist.Also visited The CF center at Colombia Presbeterian.
So why this post, I am losing weight. I am looking for suggestions. I am not good at a few little meals a day.
Rita pearl