@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.
@sueinmn im seeing a infectious diseases doctor. I had a coronary calcium score done as a check up from my cardiologist which I never didnbefornwent to a cardiologist for a chk up.pn my heart an thats when they saw the nodule it is in the lingula the left lung near the heart , the only reason they saw it. So then I went to a pulmonologist who scar3d the ahit out of me made me feel like I had stage 4 lung cancer, I asked him could this be f4om mi rheumatoid arthritis or from the methotrexate injection I have been on for 2 years? He was like no way definitely not u need to go get a petscan. So my husband was like should we make an appointment to follow up with u he says no im.gonna give u the name of a surgeon that can do a brochoscopy because you will probably be going there next. Then after I got the petscan they said that it looked like I flammtion not cancer because the sugar contrast they put in you for the petscan didnt make the are light up very high the way cancer usually dies on the scan so I saw my oncologist hematologist that I have for years and he suggested I get the biopsy to know what it is he said it looks to me like its an inflammatory thing also. So he sent me to his awsome surgeon who was fantastic and then he did the biopsy and said its not cancer but its a granuuloma with inside there is puss so we are sending it out for lab tests 2 see what we come back with it took like 10 days and 20 cultures then after the 14th day I got an email dat positive for MAC I was what the hell is that? When I looked it up on the internet I couldn't believe it. But I have no symptoms I am on a very strict mic4o bipn plant based diet because of my rheumatoid arthritis i work put 4 days a week sometimes 5 if I can do wieght training g and cardio. I do everything I can to help my rheumatoid arthritis be as inactive as I can. I also had breast cancer In 2008 that was caught as a flood also went to have a baseline done they saw a group of calcification an boom the biopsy started ened up have a full masectomy with reconstruction that was also when I was diagnosed with the rheumatoid arthritis but when I had got diagnosed with that there wasn't much information about how important your git being healthy would effect the disease so I got a med that worked great for 3 years ate what I wanted like I did t have the diseas3 so stupid within 3 years of taking sulfasalazine dc it stopped working and I was in full blown pain nothing worked for me not one medication until I changed my diet it took 7 years on prednisone till I finally found the paddison program that came out that changed everything for me and then methotrexate injection worked. But by then we moved to Florida for better weather in 2018 su shine definitely helped. So know my hands are twisted an my feet are also with bunions but I can manage my pain with no flares with diarrhea an methotrexate injection. But when I turned 57 I said let me get my heart chk up an thats when they fou d the MAC I was like come on man. But I really like my Infectious disease doctor he is very informative about the disease he mentioned ed the natio al Jewish hospital that k own everything about those disease also yo get more information about it. But still not looking good forward he said if I do t get symptoms or it doesn't look like its actively growing on the ct scan we don't treat it yet. Sometimes that could be years. So I found d thos forum which is great.
@sueinmn im seeing a infectious diseases doctor. I had a coronary calcium score done as a check up from my cardiologist which I never didnbefornwent to a cardiologist for a chk up.pn my heart an thats when they saw the nodule it is in the lingula the left lung near the heart , the only reason they saw it. So then I went to a pulmonologist who scar3d the ahit out of me made me feel like I had stage 4 lung cancer, I asked him could this be f4om mi rheumatoid arthritis or from the methotrexate injection I have been on for 2 years? He was like no way definitely not u need to go get a petscan. So my husband was like should we make an appointment to follow up with u he says no im.gonna give u the name of a surgeon that can do a brochoscopy because you will probably be going there next. Then after I got the petscan they said that it looked like I flammtion not cancer because the sugar contrast they put in you for the petscan didnt make the are light up very high the way cancer usually dies on the scan so I saw my oncologist hematologist that I have for years and he suggested I get the biopsy to know what it is he said it looks to me like its an inflammatory thing also. So he sent me to his awsome surgeon who was fantastic and then he did the biopsy and said its not cancer but its a granuuloma with inside there is puss so we are sending it out for lab tests 2 see what we come back with it took like 10 days and 20 cultures then after the 14th day I got an email dat positive for MAC I was what the hell is that? When I looked it up on the internet I couldn't believe it. But I have no symptoms I am on a very strict mic4o bipn plant based diet because of my rheumatoid arthritis i work put 4 days a week sometimes 5 if I can do wieght training g and cardio. I do everything I can to help my rheumatoid arthritis be as inactive as I can. I also had breast cancer In 2008 that was caught as a flood also went to have a baseline done they saw a group of calcification an boom the biopsy started ened up have a full masectomy with reconstruction that was also when I was diagnosed with the rheumatoid arthritis but when I had got diagnosed with that there wasn't much information about how important your git being healthy would effect the disease so I got a med that worked great for 3 years ate what I wanted like I did t have the diseas3 so stupid within 3 years of taking sulfasalazine dc it stopped working and I was in full blown pain nothing worked for me not one medication until I changed my diet it took 7 years on prednisone till I finally found the paddison program that came out that changed everything for me and then methotrexate injection worked. But by then we moved to Florida for better weather in 2018 su shine definitely helped. So know my hands are twisted an my feet are also with bunions but I can manage my pain with no flares with diarrhea an methotrexate injection. But when I turned 57 I said let me get my heart chk up an thats when they fou d the MAC I was like come on man. But I really like my Infectious disease doctor he is very informative about the disease he mentioned ed the natio al Jewish hospital that k own everything about those disease also yo get more information about it. But still not looking good forward he said if I do t get symptoms or it doesn't look like its actively growing on the ct scan we don't treat it yet. Sometimes that could be years. So I found d thos forum which is great.
@dawnlorello Hello Dawn, I love your description about being proactive in managing your rheumatoid arthritis, congratulations on making the big changes.
We are hearing more and more about incidental findings of lung nodules, finally diagnosed as MAC or bronchiectasis, when people get heart scans or lung scans. And of course, being a more rare disease, often patients get little information from the original doc and become scared when they start reading on the internet.
It is great that you found our Mayo Connect group, because we can help you sort everything out. You will also see that many of us live quite full lives in spite of yet another medical condition. It's great that you found a knowledgeable infectious disease specialist who didn't jump right to "let's start antibiotics" and instead counseled you to watch and wait. MAC is an infection, but the underlying lung disease is bronchiectasis, so it is important to monitor your lung function, and probably start a plan of airway clearance to keep it and the MAC from progressing.
I know your ID doctor mentioned National Jewish Health (NJH), but did they also recommend a local pulmonologist? That would be a good place to start.
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@sueinmn im seeing a infectious diseases doctor. I had a coronary calcium score done as a check up from my cardiologist which I never didnbefornwent to a cardiologist for a chk up.pn my heart an thats when they saw the nodule it is in the lingula the left lung near the heart , the only reason they saw it. So then I went to a pulmonologist who scar3d the ahit out of me made me feel like I had stage 4 lung cancer, I asked him could this be f4om mi rheumatoid arthritis or from the methotrexate injection I have been on for 2 years? He was like no way definitely not u need to go get a petscan. So my husband was like should we make an appointment to follow up with u he says no im.gonna give u the name of a surgeon that can do a brochoscopy because you will probably be going there next. Then after I got the petscan they said that it looked like I flammtion not cancer because the sugar contrast they put in you for the petscan didnt make the are light up very high the way cancer usually dies on the scan so I saw my oncologist hematologist that I have for years and he suggested I get the biopsy to know what it is he said it looks to me like its an inflammatory thing also. So he sent me to his awsome surgeon who was fantastic and then he did the biopsy and said its not cancer but its a granuuloma with inside there is puss so we are sending it out for lab tests 2 see what we come back with it took like 10 days and 20 cultures then after the 14th day I got an email dat positive for MAC I was what the hell is that? When I looked it up on the internet I couldn't believe it. But I have no symptoms I am on a very strict mic4o bipn plant based diet because of my rheumatoid arthritis i work put 4 days a week sometimes 5 if I can do wieght training g and cardio. I do everything I can to help my rheumatoid arthritis be as inactive as I can. I also had breast cancer In 2008 that was caught as a flood also went to have a baseline done they saw a group of calcification an boom the biopsy started ened up have a full masectomy with reconstruction that was also when I was diagnosed with the rheumatoid arthritis but when I had got diagnosed with that there wasn't much information about how important your git being healthy would effect the disease so I got a med that worked great for 3 years ate what I wanted like I did t have the diseas3 so stupid within 3 years of taking sulfasalazine dc it stopped working and I was in full blown pain nothing worked for me not one medication until I changed my diet it took 7 years on prednisone till I finally found the paddison program that came out that changed everything for me and then methotrexate injection worked. But by then we moved to Florida for better weather in 2018 su shine definitely helped. So know my hands are twisted an my feet are also with bunions but I can manage my pain with no flares with diarrhea an methotrexate injection. But when I turned 57 I said let me get my heart chk up an thats when they fou d the MAC I was like come on man. But I really like my Infectious disease doctor he is very informative about the disease he mentioned ed the natio al Jewish hospital that k own everything about those disease also yo get more information about it. But still not looking good forward he said if I do t get symptoms or it doesn't look like its actively growing on the ct scan we don't treat it yet. Sometimes that could be years. So I found d thos forum which is great.
@dawnlorello Hello Dawn, I love your description about being proactive in managing your rheumatoid arthritis, congratulations on making the big changes.
We are hearing more and more about incidental findings of lung nodules, finally diagnosed as MAC or bronchiectasis, when people get heart scans or lung scans. And of course, being a more rare disease, often patients get little information from the original doc and become scared when they start reading on the internet.
It is great that you found our Mayo Connect group, because we can help you sort everything out. You will also see that many of us live quite full lives in spite of yet another medical condition. It's great that you found a knowledgeable infectious disease specialist who didn't jump right to "let's start antibiotics" and instead counseled you to watch and wait. MAC is an infection, but the underlying lung disease is bronchiectasis, so it is important to monitor your lung function, and probably start a plan of airway clearance to keep it and the MAC from progressing.
I know your ID doctor mentioned National Jewish Health (NJH), but did they also recommend a local pulmonologist? That would be a good place to start.
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