Discontinuing MAC antibiotics

We are new to this exchange. Diagnosis Bronchiectasis. Does anyone have chronic cough?
Chronic fatigue? How much do these affect your day? The chronic cough is how we got the Bronchiectasis diagnosis but the fatigue has recently taken its toll.

Hi Sue, yes definetly. I am going to ask for one. I am also seriously considering making a appt at the Mayo Clinic. Not quite sure how to go about this or if this as very costly but believe I need a 2nd opinion

They can be stopped all at once but are you sure this is a good idea? My protocol was to stay on the antibiotics for one year following the first negative sample after three negatives in a row. In my case, I had my first negative in June 2019. I was negative in July and August so I stayed on the antibiotics until June 2020 when my doctor told me I could stop. Your husband already has months of negative samples. The idea of staying on the antibiotics after 3 negative samples is to kill more bacteria that may not have shown up in the samples so that there's a better chance of having no reoccurrence.

If he is taking them daily perhaps he can drop to 3x a week? Or make some other adjustment without stopping completely until the year is up. In any case make sure the doctor agrees to stopping them before you do.

Hi Sue - I can only hope I’m keeping it at bay. I do clear my lungs whenever I can tell it’s needed. I exercise 6x week. But my doctor does want me on the meds. I’m looking into the possibility of saline but it seems the jury is out as to whether or not it helps. Thx for asking. Take care.

Hello Sue or anyone, I am in so much pain. Headache is the worse, now having fever and overall not feeling good. Taking about 5 or 6 Tylenol 600 mg a day and when pain in my back I take motrin. Any other suggestions in relieving the headache as finding it very difficult to do anything. Please help... Please note my Pulmonologist finally prescribed the 7% saline. I started last night.

Helen - This doesn't sound like a normal medication reaction to me - more like something else is going on.
Have you contacted your primary provider? If not, I recommend that you do so very soon.
Sue

In reply to @totty….. I have bronchiectasis but have never had MAC/NTM’s. I nebulize twice daily with albuterol and 7% saline solution while wearing a smart vest. I have a chronic dry cough and regular bouts of excessive fatigue. The fatigue I manage by breaking activities into small steps and taking breaks. I do not nap so I can sleep well at night. I have the advantage of being retired now, but when I was working, I pushed through my daily schedule and collapsed until the next day. Fortunately, I did not develop bronchiectasis until after my children were grown up. I had enough struggles with chronic migraines since childhood, but did everything I could to give my everything to my kids❤️ Good luck in your journey😊

Thank you so much for your openness and details. My husband is 83 and his Bronchiectasis was recently diagnosed following aspergillosis. Just when we thought we were making progress the chronic cough worsened and chronic fatigue also appeared out of no where!
What is the benefit of the vest?
Do you recommend a particular vest?
It is reassuring to know that you have weathered these issues for a long period of time
but unfortunate for you that you have suffered so long. At our ages we are thankful for every day and want to combat this Bronchiectasis every possible way. Again thank you!

Hi Sue, Thank you for responding. I spoke to my ID doctor and Pulmonologist and apparently this is somewhat normal. Hopefully if anything wrong in my back it will show up on the x-ray. My blood work came back within the normal ranges and may sputum test was Negative. I have not had this test before I don't think I have and it came back quick. The last sputum took 3 weeks. The test is Pneumocystis Jirovecii Smear? I spoke to the Aryikace Nurse and she advised if my headache gets any worse to go to the ER. I am trying to prevent this but assured her I would. Right now everything seems calm and pray it stays this way. I have tried the 7% saline 2 times and will do again now, not sure how soon it should start working but, so far not much of a difference in producing sputum. Once again thank you Sue and everyone going through this difficult time. God Bless

My husband’s ID/Pulmonologist and our primary care doc agree that taking a break from the MAC drugs may give him some relief. His June CT showed some improvement.
The side effects from the drugs have overwhelmed him and are doing more damage than good with the strain of constant SOB and continuing weight loss putting him in an ever weakened state. We are hoping the break helps him to get back on track.
Melissa