Extreme fatigue with MAC
Good Morning, I am new here so this may have been discussed before. I was diagnosed with MAC in 2012 after I was diagnosed with breast cancer. I had a biopsy and lung wedge resection…both confirmed the MAC. In 2015 I had a bronchoscope done which again confirmed the MAC and bronchiectasis. I have seen a Pulmonologist, infectious disease and my primary care doctor. Everyone seems up in the air whether to treat or not. They seem to be leaving the decision up to me. I don’t have a cough, I do have some shortness of breath occasionally but I am always tired. No matter how much I rest or sleep…..I am tired and sometimes exhausted after minor activity. Is fatigue a main symptom of the disease. Would treatment help my fatigue or make is worse. Thank you!
franthony
@franthony
@franthony
Posts: 32
Joined: Jan 04, 2018
Hi there…thank you for responding. I have had a PET scan, CT scan every year. Had a bronch….blood work and had my heart check. Only MAC and Bronchiectasis results. My fatigue is far worse than my shortness of breath. My husband is convinced that my SOB is from the MAC and wants me to get treated. The doctors are usually ready to treat then my CT doesn't show change so they say…. "Well you can put off the treatment if you want to". I'm just confused. Do I or don't I need treatment. And….my main questions, is fatigue a big part of MAC? I understand you aren't a doctor. I guess I am venting and asking questions at the same time. Thank you 🙂
@windwalker and others, I am curious as to whether others have had issues timing taking their pills. The first four weeks I took them first thing in the morning, which meant I had to wait to have my morning chai latte. So week 5 I set up the Rifampin and a covered glass of water on my bedside table (I discovered last year that my cat was enjoying drinking from my glass during the night!), and took those two pills in the wee hours of the morning. End result, I was so sick all that week, nauseated by late afternoon, unable to eat (yet I didn't even lose one single lb.), and so tired I was sleeping 12–14 hours each night. So week 6 I decided to have my chai latte when I get up, walk the dogs, keep busy for another hour, take pills, keep busy for another hour, then finally enjoy a hearty brunch. By week 7 I started feeling much better, and although I still can only do gardening or other physical tasks for two hours before I become too tired to carry on, at least I have begun to start accomplishing some things again.
Has anyone else had to adjust their MWF morning schedule due to side effects?
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Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
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Hi there…thank you for responding. I have had a PET scan, CT scan every year. Had a bronch….blood work and had my heart check. Only MAC and Bronchiectasis results. My fatigue is far worse than my shortness of breath. My husband is convinced that my SOB is from the MAC and wants me to get treated. The doctors are usually ready to treat then my CT doesn't show change so they say…. "Well you can put off the treatment if you want to". I'm just confused. Do I or don't I need treatment. And….my main questions, is fatigue a big part of MAC? I understand you aren't a doctor. I guess I am venting and asking questions at the same time. Thank you 🙂
Great idea about changing the timing of your meds (especially since it helped you feel better). You can always check with your prescribing doctor or your pharmacist to be sure that your timing of the pills will result in the best results, but I'm glad to hear that you are doing better now.
While I don't have MAC or other lung problems, I have adjusted the timing of my meds as well, and I've been told that as long as you take them at the same time every day that it is generally OK.
So, check with your pharmacist if you have any concerns about the medications' effectiveness and the timing of them.
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Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3838
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@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis. That is what makes it so frustrating for us patients. One thing for sure is, you must arm yourself with as much information as you can about it. That way you know what questions to ask and also things you can do to help your situation. I have been on this site since 2016. I have seen one person come back on here and say that she has gone through the Big 3 antibiotic regimen and is mac free and has been for years. We can speculate that others got better also and just left the site. I have asked that those who are concluding their treatment to please check back and let us know how they are doing. They can be the beacon of hope to others. @irene5, had once said that she wishes she had gotten the Big 3 antibiotics sooner because of lung deterioration. (that was you wasn't it Irene?) I cannot say for sure that my delay in a regimented treatment didn't cause my lungs to get to the point where they are at now, which is very low lung function. Please do not panic or get depressed because of your diagnosis. Everyone's experience with this is different. For example: look at @ling123, she is proof that we can have this disease at varying levels. For some it is a minor impairment, for others it can be deadly, and most of us are somewhere in the middle. There is a lot of good information on this site about dealing with this disease, how you get it, how you prevent re-infection, etc. Medical sites like Mayo Clinic, John Hopkins, and National Jewish Health are also good sources. It is important that you do the work to learn all that you can about. We are here for you!
@jkiemenHi Jo Ann. I keep wondering the same thing. Would testosterone help us? BTW, how are you doing? Are you feeling any better mentally?
Jo Ann K
@jkiemen
@jkiemen
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@windwalker I am starting month 9 of the Big 3. Some days I feel good, some days tired. I am upset that I was declined for Life Insurance.
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prelle1
@prelle1
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Joined: Nov 19, 2018
I too had breast ca then developed MAC. I was put on the 3 Antibiotics in 2009. Did not receive any follow up or advice at MD Anderson where I was treated and decided myself to go off the meds after 9 months. Now in 2018 , my cough is back and the fatigue is extreme . I have basically had no treatment but for the icassiinalt Zithromax my GP was providing . I am basically a. Invalid now not really going out. I need some treatment and MD Andrrson won’t really treat. I am so glad to get to this site and all of you because I did not know anyone who had the disease except a guy who had part of his lung cut out. Where should I go for treatment ? Which is the best clinic and the best doctors. I was really ready to give up until I heard all of your voices! Thank you did much ! I had just felt so alone in this and the doctors I saw just didn’t want to get involved in this disease.
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Jo Ann K
@jkiemen
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Terri Martin., Volunteer Mentor
@windwalker
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I too had breast ca then developed MAC. I was put on the 3 Antibiotics in 2009. Did not receive any follow up or advice at MD Anderson where I was treated and decided myself to go off the meds after 9 months. Now in 2018 , my cough is back and the fatigue is extreme . I have basically had no treatment but for the icassiinalt Zithromax my GP was providing . I am basically a. Invalid now not really going out. I need some treatment and MD Andrrson won’t really treat. I am so glad to get to this site and all of you because I did not know anyone who had the disease except a guy who had part of his lung cut out. Where should I go for treatment ? Which is the best clinic and the best doctors. I was really ready to give up until I heard all of your voices! Thank you did much ! I had just felt so alone in this and the doctors I saw just didn’t want to get involved in this disease.
@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
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@windwalker I am starting month 9 of the Big 3. Some days I feel good, some days tired. I am upset that I was declined for Life Insurance.
@jkiemen, I hear you about the decline in life insurance. I was declined health insurance for many yrs until I got on Disability. Aggrevating!
prelle1
@prelle1
@prelle1
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Joined: Nov 19, 2018
I was also diagnosed with MAC after Breadt Ca. In 2009. I was so sick that t had no choice but to go on the big 3 meds. It really helped me. I only stayed in for 9 months and wish I had done a year at least. I was able to get my life back and resume normal activities . After my breast ca treatment in 2009 I had gone to China and thinker now that is where I must have picked it up???
Now in 2018 I returned to China on a cruise. My MAC is back . This was a very bad decision for me . I had been getting progressively more tired now I can’t even do anything . I may be ready to start a course of the big 3 again .
prelle1
@prelle1
@prelle1
Posts: 16
Joined: Nov 19, 2018
@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.
Thx so much I have not been treated for 9 years and have been going it alone. Now because of my”invalid status” I need to do something . As I said I went in the3 meds 9 years ago I had pneumonia 3 x and couldn’t walk across the room . I had to help the doc with writing the script and he never even followed me up on the meds or told me about Any Eye problems etc. I went it alone . I was so sick so fast and recovering from ca that I just didn’t have time to think the med regime might be more difficult than what I was facing. I had no follow up. Now I am tired all the time my symptoms came back after I stupid cruise to china. I was seen at MDanderson and treated there. I have an appointment with infectious disease in a week . Thank you so much , my name is Ellen
prelle1
@prelle1
@prelle1
Posts: 16
Joined: Nov 19, 2018
@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.
Ellen houston tx
prelle1
@prelle1
@prelle1
Posts: 16
Joined: Nov 19, 2018
prelle1
@prelle1
@prelle1
Posts: 16
Joined: Nov 19, 2018
@prelle1 Hi there. Welcome our group. Do you have a first name? Gosh, it sounds like you are having a rough time right now. How disheartening it is to not be able to get the proper care that you need. Now, more than ever, you will need to advocate for yourself. Mac infection is supposedly a rare thing and many doctors do not know how to properly treat it. First and foremost, we need to find you good medical care. May I ask what state you live in, & what town or city you live on? I can help you to locate a knowledgeable physician. Please do not get discouraged, help is out there; we just need to connect to the right dr.
I am so brain fogged that I didn’t remembering posting one of my responses. Can you name a doc , I will go anywhere . It it best to go to Mayo in Fla or Az for this and who is the better treaters. I just feel so powerless.
pkayh
@pkayh
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Joined: Jan 04, 2018
@src3acs I suppose just because I don't have the problem with shortness of breath, it doesn't mean other people who have been diagnosed with MAC don't share your experience. Let's hope others in this group can provide more information on that front. When I was first diagnosed with MAC, I was also given the option of going on the drug treatment or not. After considering the pros and cons of the drug effects on the infection as well as on my body (other organs), I decided to wait and see. My pulmonologist agreed with me. Since the initial diagnosis, I have had chest X-rays and a CT scan. The results point to improvement. As a result my doctor thinks we should continue the wait-and-see path. There are so many people in this group who have the same diagnosis as you and me. Let's hope that there are others who also share your symptoms and are able to provide you with more reassuring answers to your questions.
I have had bronchiectasis for 18 years and am at this point short of breath and have fatigue, but these things did not show up until about 3 years ago. I have had a cough right along, but on the whole did not suffer much until recently. So you may have many years before you develop these symptoms Who knows, by then there may be a cure ! I can still do 10 minutes 3 x a week on the treadmill (1.8 m/h) and 10 min. on the NuStep, which my pulmonogists strongly recommend.
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@tdrell
@macjane…wondering if your lack of sleep and nightmares are a result of a form of sleep apnea/obstruction. Google it….My sleep apnea was discovered by chance when l had the bronchoscopy for my cough. I had a subsequent sleep study that show my breathing stopped 43-47 times an hour. Whereas I did not have the typical symptoms….waking with headache. feeling groggy all day etc….l did have vivid dreams…ended up jumping out of bed several times to avoid being gunned down (in nightmare) etc.
Have been on CPAP for over a year now.. do not have those dreams anymore except when mask not fit.ting face correctly.
There are other reasons for vivid dreams….some medications may cause that….google insomnia. tdrell