I am pretty new to all of this (in fact, this is my first post), but I have had new-onset anemia with my MAC. It is my understanding that it is not uncommon due to prolonged inflammation and immune activation, but I wouldn't swear to that :).
My hemoglobin was at its lowest when my MAC infection was worst. Never connected the two. However my husband's hemoglobin drops when he gets a UTI or kidney infection.
I've been anemic for several years now, with low hemoglobin, etc., but nobody other than my primary care doctor has commented on it. Nobody has connected it to my cystic fibrosis and bronchiectasis. I've had numerous lung infections, so maybe there is a connection....
@ritapearl...I have had anemia since my MAC infection in 2013. While the MAC is in remission, the anemia continues as well as very low PTH (parathyroid hormone) which likely developed after all the prednisone treatments (according to my doctor of Chinese medicine). My pulmonologist has always said, "the MAC won't kill you, but the steroids will" Luckily, I've kept my lungs mostly clear with daily drainage and nebulizer treatments and so far avoided more oral steroids.
I am pretty new to all of this (in fact, this is my first post), but I have had new-onset anemia with my MAC. It is my understanding that it is not uncommon due to prolonged inflammation and immune activation, but I wouldn't swear to that :).
Thank you for the welcome! I was diagnosed with MAC in January. I had caught a cold in early December that kept getting worse. I finally went to urgent care on New Year's Eve where they promptly called an ambulance after discovering that I was hypoxic. I was hospitalized with multifocal pneumonia with acute hypoxic respiratory failure and severe sepsis. On the bronchoscopy, the only pathogen initially identifed was rhinovirus, but they also suspected aspiration pneumonia because I apparently had some dysphagia. A few weeks later, the AFB cultures came back showing MAC. They chose to start me on the Big 3 because of the clinical presentation and because I am significantly immunocomprised secondary to a treatment for lupus. In March, I had my second CT, which was when I was diagnosed with bronchiectasis. Since the anemia is thought to be due to chronic inflamation, the main focus has been trying to get the MAC under control. I had to go off of rifampin due to adverse effects and am now on moxifloxacin and hope to see movement in the right direction. This forum has been a font of very useful information as I go through this!! I think I have learned more to help me on this journey from all of you here than anywhere else!
Thank you for the welcome! I was diagnosed with MAC in January. I had caught a cold in early December that kept getting worse. I finally went to urgent care on New Year's Eve where they promptly called an ambulance after discovering that I was hypoxic. I was hospitalized with multifocal pneumonia with acute hypoxic respiratory failure and severe sepsis. On the bronchoscopy, the only pathogen initially identifed was rhinovirus, but they also suspected aspiration pneumonia because I apparently had some dysphagia. A few weeks later, the AFB cultures came back showing MAC. They chose to start me on the Big 3 because of the clinical presentation and because I am significantly immunocomprised secondary to a treatment for lupus. In March, I had my second CT, which was when I was diagnosed with bronchiectasis. Since the anemia is thought to be due to chronic inflamation, the main focus has been trying to get the MAC under control. I had to go off of rifampin due to adverse effects and am now on moxifloxacin and hope to see movement in the right direction. This forum has been a font of very useful information as I go through this!! I think I have learned more to help me on this journey from all of you here than anywhere else!
If there is no certain cause for the anemia, you may want to ask your pcp to blood screen you for celiac disease. I am suggesting this since you have lupus and other autoimmune diseases are more common when you already have one. Anemia is a common side effect of undiagnosed celiac disease-and sometimes the only “symptom”.
Thank you for the welcome! I was diagnosed with MAC in January. I had caught a cold in early December that kept getting worse. I finally went to urgent care on New Year's Eve where they promptly called an ambulance after discovering that I was hypoxic. I was hospitalized with multifocal pneumonia with acute hypoxic respiratory failure and severe sepsis. On the bronchoscopy, the only pathogen initially identifed was rhinovirus, but they also suspected aspiration pneumonia because I apparently had some dysphagia. A few weeks later, the AFB cultures came back showing MAC. They chose to start me on the Big 3 because of the clinical presentation and because I am significantly immunocomprised secondary to a treatment for lupus. In March, I had my second CT, which was when I was diagnosed with bronchiectasis. Since the anemia is thought to be due to chronic inflamation, the main focus has been trying to get the MAC under control. I had to go off of rifampin due to adverse effects and am now on moxifloxacin and hope to see movement in the right direction. This forum has been a font of very useful information as I go through this!! I think I have learned more to help me on this journey from all of you here than anywhere else!
Have you discussed the possible connection between MAC and anemia with your pulmonologist? Unless it is mild the anemia should not be ignored until the MAC is controlled because that can take many months.
Have you discussed the possible connection between MAC and anemia with your pulmonologist? Unless it is mild the anemia should not be ignored until the MAC is controlled because that can take many months.
Thank you both for your concern and suggestions! For me, the onset clearly coincided with the severe exacerbation/hospitalization that led to the diagnosis. The anemia did persist after the sepsis resolved, but, since the hospitalization, it has been mainly mild, with only one transient drop into moderate. My ID doctor actually was the first to mention the connection in passing as he looked at my labs, and I looked into it a bit to see what the mechanism might be (particularly since it predated my first episodes of hemoptysis). It appears that the anemia that can be seen with MAC is not specific to it, but likely an instance of the broader category of "anemia of inflammation" (AKA "anemia of critical illness", if acute, and "anemia of chronic disease" , when chronic). It is seen in association with many inflammatory conditions including acute and chronic infections and autoimmune disease. It is thought to be driven by an immune response, which results in storage or sequestration of iron. This keeps the iron away from a pathogen (MAC apparently likes iron), which is a useful response acutely, but chronically, it also keeps it (quite literally) out of circulation. Anyway, at least for now, the anemia is fortunately not bad enough to worry about. It is just a part of my new normal (and actually less disconcerting than recently discovering I have E. coli in my lungs, which was just weird).
Thank you for the welcome! I was diagnosed with MAC in January. I had caught a cold in early December that kept getting worse. I finally went to urgent care on New Year's Eve where they promptly called an ambulance after discovering that I was hypoxic. I was hospitalized with multifocal pneumonia with acute hypoxic respiratory failure and severe sepsis. On the bronchoscopy, the only pathogen initially identifed was rhinovirus, but they also suspected aspiration pneumonia because I apparently had some dysphagia. A few weeks later, the AFB cultures came back showing MAC. They chose to start me on the Big 3 because of the clinical presentation and because I am significantly immunocomprised secondary to a treatment for lupus. In March, I had my second CT, which was when I was diagnosed with bronchiectasis. Since the anemia is thought to be due to chronic inflamation, the main focus has been trying to get the MAC under control. I had to go off of rifampin due to adverse effects and am now on moxifloxacin and hope to see movement in the right direction. This forum has been a font of very useful information as I go through this!! I think I have learned more to help me on this journey from all of you here than anywhere else!
I agree completely, this forum has been very helpful in teaching us a lot about how to deal with this problem and its context.
Thank to all of you who makes it possible.
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I am pretty new to all of this (in fact, this is my first post), but I have had new-onset anemia with my MAC. It is my understanding that it is not uncommon due to prolonged inflammation and immune activation, but I wouldn't swear to that :).
-
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Helpful -
Hug
3 ReactionsMy hemoglobin was at its lowest when my MAC infection was worst. Never connected the two. However my husband's hemoglobin drops when he gets a UTI or kidney infection.
-
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Helpful -
Hug
1 ReactionI've been anemic for several years now, with low hemoglobin, etc., but nobody other than my primary care doctor has commented on it. Nobody has connected it to my cystic fibrosis and bronchiectasis. I've had numerous lung infections, so maybe there is a connection....
-
Like -
Helpful -
Hug
1 Reaction@ritapearl...I have had anemia since my MAC infection in 2013. While the MAC is in remission, the anemia continues as well as very low PTH (parathyroid hormone) which likely developed after all the prednisone treatments (according to my doctor of Chinese medicine). My pulmonologist has always said, "the MAC won't kill you, but the steroids will" Luckily, I've kept my lungs mostly clear with daily drainage and nebulizer treatments and so far avoided more oral steroids.
-
Like -
Helpful -
Hug
1 ReactionWelcome @salynn. How long have you been dealing with MAC? What do you do to help with the anemia?
Thank you for the welcome! I was diagnosed with MAC in January. I had caught a cold in early December that kept getting worse. I finally went to urgent care on New Year's Eve where they promptly called an ambulance after discovering that I was hypoxic. I was hospitalized with multifocal pneumonia with acute hypoxic respiratory failure and severe sepsis. On the bronchoscopy, the only pathogen initially identifed was rhinovirus, but they also suspected aspiration pneumonia because I apparently had some dysphagia. A few weeks later, the AFB cultures came back showing MAC. They chose to start me on the Big 3 because of the clinical presentation and because I am significantly immunocomprised secondary to a treatment for lupus. In March, I had my second CT, which was when I was diagnosed with bronchiectasis. Since the anemia is thought to be due to chronic inflamation, the main focus has been trying to get the MAC under control. I had to go off of rifampin due to adverse effects and am now on moxifloxacin and hope to see movement in the right direction. This forum has been a font of very useful information as I go through this!! I think I have learned more to help me on this journey from all of you here than anywhere else!
-
Like -
Helpful -
Hug
2 ReactionsIf there is no certain cause for the anemia, you may want to ask your pcp to blood screen you for celiac disease. I am suggesting this since you have lupus and other autoimmune diseases are more common when you already have one. Anemia is a common side effect of undiagnosed celiac disease-and sometimes the only “symptom”.
Have you discussed the possible connection between MAC and anemia with your pulmonologist? Unless it is mild the anemia should not be ignored until the MAC is controlled because that can take many months.
Thank you both for your concern and suggestions! For me, the onset clearly coincided with the severe exacerbation/hospitalization that led to the diagnosis. The anemia did persist after the sepsis resolved, but, since the hospitalization, it has been mainly mild, with only one transient drop into moderate. My ID doctor actually was the first to mention the connection in passing as he looked at my labs, and I looked into it a bit to see what the mechanism might be (particularly since it predated my first episodes of hemoptysis). It appears that the anemia that can be seen with MAC is not specific to it, but likely an instance of the broader category of "anemia of inflammation" (AKA "anemia of critical illness", if acute, and "anemia of chronic disease" , when chronic). It is seen in association with many inflammatory conditions including acute and chronic infections and autoimmune disease. It is thought to be driven by an immune response, which results in storage or sequestration of iron. This keeps the iron away from a pathogen (MAC apparently likes iron), which is a useful response acutely, but chronically, it also keeps it (quite literally) out of circulation. Anyway, at least for now, the anemia is fortunately not bad enough to worry about. It is just a part of my new normal (and actually less disconcerting than recently discovering I have E. coli in my lungs, which was just weird).
-
Like -
Helpful -
Hug
1 ReactionI agree completely, this forum has been very helpful in teaching us a lot about how to deal with this problem and its context.
Thank to all of you who makes it possible.