Extreme fatigue with MAC

Hi @src3acs, I, too, was diagnosed with bronchiectasis and MAC over 3 years ago. I have not taken any drugs for MAC (there is no effective drugs for bronchiectasis). I don't know for sure if I'm still infected with MAC. But because my last chest X-ray indicated improvement in my lung conditions, I assume I'm no longer infected. Since there is no cure for bronchiectasis, the best we can do is to manage it in order to slow down the progression of the disease. I have not had any symptoms of shortness of breath or fatigue. Not even when I was first diagnosed. In fact I'm still physically very active, playing tennis 2-3 times a week without any of these problems. I'm not a doctor. But I suspect that the shortness of breath you are experiencing could cause the fatigue because of lack of oxygen in your blood. Is it possible that you might have other issues with your lungs besides bronchiectasis and MAC? Have your doctors looked into that possibility?

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 🙂

@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.

Thank you again for they response. I only had the MAC in my right lung until 2016 my CT scan showed some MAC in my left lung. Since then no change. No improvement either. Ugh......just not sure what to do. I hope you continue to see improvement!

This is a tough one! In reading the other posts I ran across “ you can put off treatment if you want to.” That is a pretty standard answer when your symptoms are shortness of breath and extreme fatigue. Add loss of 18%body weight for me. The bottom line is that treatment is inevitable. If you wait - maybe - just maybe there will be a less toxic treatment. The reason many doctors leave treatment up to the patient is because the treatment is grueling for most. I have been on it three times and always have to be taken off the meds. Some people are able to tolerate them. Good luck with your decision.

@src3acs I feel for you. It must be very frustrating that you constantly feel tired and can't do things that you enjoying doing. I sure hope you'll eventually be able to find the right treatment for you and start seeing some improvement.

I also have sudden waves of fatigue and just general weakness. I've only been on meds for 3 weeks so hoping my body adjusts soon. I had been coughing almost continuously but that is beginning to decrease somewhat. Making the decision to begin treatment is personal. As I said, it seems to be working for me. Good luck with your decision.

Mary

Hi Mary1944, did you have the fatigue before treatment? I am trying to determine if my fatigue is a symptom of the MAC.

Hi @src3acs I definitely had shortness of breath and fatigue with my MAC, if I did housework I had to have a rest every 10 mins. It was a constant shortness of breath, just as bad when I started my walk to when I finished, no puffing just feeling short of breath. It has gone now that I have been on the meds and the MAC has reduced. If it is really bothering you and your ct scan shows alot of MAC talk to your dr about it. It is always a difficult decision. All the best.

I know you did not ask me this question but exhaustion was one of the symptoms I had prior to treatment. The exhaustion has never improved for me, unfortunately. When I did the research study I explained that to them as well because it is not the regular kind of tired.