How long after taking antibiotics does ability to breathe come back?

Posted by cindy007 @cindy007, Nov 15 1:02am

My husband has recently been diagnosed with MAC after more than a year of visiting doctors who dismissed his complaints that something was seriously wrong. During the past year his breathing became difficult and he is now fully on oxygen, and cannot take it off for even a minute. From no oxygen to full oxygen in one year. He is also very fatigued and unable to walk more than 10 feet without having to stop and rest. He is just two weeks into his 3 antibiotic regimen and seems to tolerate the meds well. So thankful for that. Has anyone experienced the need for high level oxygen use that started to resolve after treatment and if so, how long did it take for you to be able to breathe or at least scale back on the oxygen use? I have not read many posts about oxygen use or how it has improved or not improved with medication. Thank you for reading!

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Your husband sounds extreme for just MAC. What is his spo2 and pft numbers? Do you live at elevation? I have a variety of diseases and o2 requirements over 6 years too long to list here. I recently moved from Denver to sea level and have not used o2 at all

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Is your husband seeing a MAC bronchiectasis specialist? It makes difference to find a specialist rather than a general pulmonologist.

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Yes, he is seeing a specialist and yes we are at a high elevation in Utah. He does have additional health issues that appear to aggravate the MAC infection, specifically lung scarring from scleroderma, which he lived with and seemed to be at bay for several years. It was not until the past year that the cough, heavy mucus with color and lack of oxygen became extreme. He is now also having upper GI issues and we don't know if this is part of the MAC problem or if it is an additional medical dilemma. He will be seeing gastro next week to find out if there are additional medical problems at play, but the extreme tightening in his upper gut causes breathing to be even more difficult. His current doctors are taking this all seriously and trying to help nail down all that is ailing him, but I found that forums with real people who are experiencing the same types of issues to be the best place to find answers and helpful solutions. Thank you to all who respond.

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@rstel7272

Your husband sounds extreme for just MAC. What is his spo2 and pft numbers? Do you live at elevation? I have a variety of diseases and o2 requirements over 6 years too long to list here. I recently moved from Denver to sea level and have not used o2 at all

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Hello Rick.
I have read many of your posts and you have been kind and responded to my questions also.
Interesting: "moved from Denver to sea level and have no used o2 at all. " That must have required a great deal just to do that.
Your discovery reminded me of what happened with my Mother who was diagnosed with Emphysema. Mother smoked for 50 years. My parents had a winter condo in Florida on the 19th floor. Mother, once the emphysema progressed to a certain point, did very poorly at that building height and they had to stop going to the condo.
We make changes in life for all different reasons.....one being our health.
Barbara

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@cindy007

Yes, he is seeing a specialist and yes we are at a high elevation in Utah. He does have additional health issues that appear to aggravate the MAC infection, specifically lung scarring from scleroderma, which he lived with and seemed to be at bay for several years. It was not until the past year that the cough, heavy mucus with color and lack of oxygen became extreme. He is now also having upper GI issues and we don't know if this is part of the MAC problem or if it is an additional medical dilemma. He will be seeing gastro next week to find out if there are additional medical problems at play, but the extreme tightening in his upper gut causes breathing to be even more difficult. His current doctors are taking this all seriously and trying to help nail down all that is ailing him, but I found that forums with real people who are experiencing the same types of issues to be the best place to find answers and helpful solutions. Thank you to all who respond.

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So much to know, research and learn and do when we or our loved ones have health problems.
Many of us with BE (Bronchiectasis) have GI problems such as Acid Reflux or Hiatal Hernia.
Hiatal Hernia's can cause Acid Reflux and further problems. Glad a gastroenterologist is going to be seen.
Having multiple problems for us makes things so much more complicated and harder to know in what direction to go in...... so all we can do is "the best we can do" and it sounds like you both are doing that.
Barbara

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@cindy007

Yes, he is seeing a specialist and yes we are at a high elevation in Utah. He does have additional health issues that appear to aggravate the MAC infection, specifically lung scarring from scleroderma, which he lived with and seemed to be at bay for several years. It was not until the past year that the cough, heavy mucus with color and lack of oxygen became extreme. He is now also having upper GI issues and we don't know if this is part of the MAC problem or if it is an additional medical dilemma. He will be seeing gastro next week to find out if there are additional medical problems at play, but the extreme tightening in his upper gut causes breathing to be even more difficult. His current doctors are taking this all seriously and trying to help nail down all that is ailing him, but I found that forums with real people who are experiencing the same types of issues to be the best place to find answers and helpful solutions. Thank you to all who respond.

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I highly suggest you consider moving to a very low elevation. I dud and so have many others. Discuss this with your pulminologist.

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I would ask more questions about the scleroderma and whether it has advanced, or remains stable. My aunt had interstitial lung disease and was stable for a long time but then suddenly had a dramatic decline requiring constant oxygen. Her sister, my other aunt, went through something similar, also interstitial lung disease. I am new to a MAC diagnosis so no expert but the severity and timeline of your husband’s symptoms, particularly his oxygen requirements, suggests to me more is at play than MAC. That said, I have read that the course of the antibiotics for MAC is so long because it is difficult for the antibiotics to get into the lung structures and target the MAC bacteria. So, I would think, without any direct experience (I am asymptomatic and not on antibiotics yet), that two weeks is likely too early to see significant clinical changes. However, I have read comments by others on how much better they felt after the antibiotic treatment so hopefully some will share their experiences and the timelines for their improvement. Also, and I think Rick already asked this, but are you tracking your husbands oxygenation? There is a difference between feeling short of breath because one cannot get enough oxygen in, as opposed to one not being get enough oxygen out. I assume your husband’s doctor is monitoring since they must be prescribing the oxygen. If your husband is not getting enough air in, that suggests restriction, which to me (a non-doctor) points to the scleroderma or other restrictive process. Those of us with MAC often have bronchiectasis, which causes challenges getting air out, so our oxygen saturation may be fine but we still can feel short of breath. If your husband has had a recent PFT it will point to whether your husband’s breathing problems are restrictive or obstructive, and of course some of us have both restrictive and obstructive disease, which may be the case with your husband, again back to that “perfect storm” scenario. It sounds like you feel confident at this point in your medical team which is so important. Good luck. I hope others with more experience than I can provide more helpful insight.

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Less than a year ago I was diagnosed with MAC and bronchiectasis. I've had asthma since my 20's. I was so fortunate to get in with Dr. Kevin Winthrop at Oregon Health Science University OHSU.... saw him last MID December. I had read everything I could in order to be prepared for that appointment and ask right questions. I knew of antibiotics that would be recommended and side effects. I was very concerned that treatment would be as bad as the diseases themselves. I could hardly walk a few feet because breathing was so bad and it happened pretty fast once it started. I am not exaggerating when I say by third treatment I was breathing better with no side affects other than my voice getting horse from nebulizer treatment.
OHSU is a teaching hospital and research. I did agree to be in several study groups. So, I'm in one using 2 antibiotics not three. I use Etambutol and Azithrymicin 3x week. My instructions were to take them 2 hours before bed with ice cream...lol... true story. No nausea, upset tummy.. nothing. I take them with about 1/2 cup of skin milk or a tlsp spoon or 2 of yogurt. And, sometimes ice cream. I started breathing so much better so fast I was able to resume my exercise and dancing. It was a miracle. Dr Winthrop had told me he was going to get me healthy again but, it could take at least 1-2 years. I just did a new CT scan and pulmonary study. PFT was 44% last year and I am now 56%. CT shows much improvement. Tree n bud still present was much less and bronchiectasis improved as well. I see Dr again early Dec. And will get new prognosis. I'm thinking I might be on antibiotics forever because of age (76), and I have autoimmune hepatitis and on immunotherapy drugs which allowed the MAC to enter my already compromised lungs.
Good luck to you..I encourage you to start treatment!

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The antibiotic will continue to work for at least a week after stopping the meds , maybe longer. It usually takes about 3 weeks for my breathing to start returning to normal.

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@aliveandwell

Less than a year ago I was diagnosed with MAC and bronchiectasis. I've had asthma since my 20's. I was so fortunate to get in with Dr. Kevin Winthrop at Oregon Health Science University OHSU.... saw him last MID December. I had read everything I could in order to be prepared for that appointment and ask right questions. I knew of antibiotics that would be recommended and side effects. I was very concerned that treatment would be as bad as the diseases themselves. I could hardly walk a few feet because breathing was so bad and it happened pretty fast once it started. I am not exaggerating when I say by third treatment I was breathing better with no side affects other than my voice getting horse from nebulizer treatment.
OHSU is a teaching hospital and research. I did agree to be in several study groups. So, I'm in one using 2 antibiotics not three. I use Etambutol and Azithrymicin 3x week. My instructions were to take them 2 hours before bed with ice cream...lol... true story. No nausea, upset tummy.. nothing. I take them with about 1/2 cup of skin milk or a tlsp spoon or 2 of yogurt. And, sometimes ice cream. I started breathing so much better so fast I was able to resume my exercise and dancing. It was a miracle. Dr Winthrop had told me he was going to get me healthy again but, it could take at least 1-2 years. I just did a new CT scan and pulmonary study. PFT was 44% last year and I am now 56%. CT shows much improvement. Tree n bud still present was much less and bronchiectasis improved as well. I see Dr again early Dec. And will get new prognosis. I'm thinking I might be on antibiotics forever because of age (76), and I have autoimmune hepatitis and on immunotherapy drugs which allowed the MAC to enter my already compromised lungs.
Good luck to you..I encourage you to start treatment!

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Thank you so much for your response, this is very helpful. We have not had nebulizer treatments, can you expand more on that please? We see the doctor this week after two weeks of oral antibiotics but I would like to ask him about the nebulizer treatments. Again, thank you for the information.

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