Completed 16 months of the big 3. CT unchanged

I originally did 28 months of the big 3 which included amikacin iv and arikayce. My ct was unchanged but can also mean stable.

@yaduhyaduhsquawk I find this topic one of the most confounding. I have often been told CTs don’t necessarily improve with treatment. That a stable CT is a reasonable goal; we do not want to see progression. But many CTs do improve. Then of course it seems every doctor has a different opinion as to what is even going on in my CTs, so it’s hard to know how the doctors even arrive at these distinctions. But if you sputum converted over 12 months ago, and your doctor isn’t seeing any improvement on CT, that may be why she thought it ok to stop. My specialist said we would only extend beyond the 12 months from sputum conversion if we saw signs of continued response on CT. If not, not. There is a cost v. benefit to these drugs and if there are no signs of continued benefit the costs have to be reevaluated. Hopefully you have a follow up appointment soon with your medical team and can review where you are and what makes sense moving forward. Good luck.

@bayarea58
Thank you for sharing your experience. It is indeed perplexing. Very tough for someone like me who likes a clear answer; backed up by science. Arrrrgh! 🫤

@rstel7272
Thank you for sharing your experience. I do like the word, stable.
Wow (28 months!) and ugh! 🫤

@bayarea58 @yaduhyaduhsquawk My recent CT Scan showed improvement, mucus plug gone from what was said to be worse on the CT Scan findings before this last CT Scan and the doctor also said less inflammation. Hoping it stays that way or gets even better.

I have not been on antibiotics with the low intercellular infection. I was put on wait and watch in 2023 by the NJH doctor. There is now very little to nothing being reported in the last couple of sputum samples for the intercellular. No new bacteria either, so far.
Just hope that all holds.

Also, early on three doctors other than NJH thought I should try the antibiotics. One doctor said...if in six months and no change I could decide to get off or continue with the antibiotics. I believe they expect and hope for a change in six months and then if there is a change continue for another six months to hopefully wipe out the infection. completely. As many of us have now learned. wipe it out or is it just hiding???
I say all this about my journey since 2023 because of "we are all different." This makes it difficult to know the why of things for us and for the doctors, I would imagine.
Barbara

I had to take the meds for 21 mos. Some people have taken them for longer, some for less.
Sputum samples had to be sent to specialty lab to determine if they were free of MAC. Some doctors might have you continue for another month after you test clear. You need to be seeing an infectious disease doctor who is very knowledgeable about MAC.

FWIW, my CT reports from the start have all said the ground glass, trees in bud, and mucus impactions are suggestive of MAC. However, to the surprise of all, the sputum from bronch at Mayo was negative for it. I’ve had 2-3 more CT’s since then and the radiologists at Penn have also said the waxing/waning changes (trees in bud, ground glass, etc) are consistent with MAC and I even told the last tech to mention to radiologist that I don’t have MAC, just bronchiectasis.
I asked my pulmonologist about it and he said radiologists like to feel helpful by offering possibilities. I suggested they find a less dire diagnosis to offer.
It’s been over a year and I’ll get another in early November.

@joyeous
Thank you for your expertise, very helpful! I am waiting to hear the answers to my questions from my pulmonologist. Would like to get those first; before switching over. That is my plan!

@blm1007blm1007
Thank you for your experience. It is helpful to me. Yes, indeed we are all different! =)

@pacathy,
It has always been my understanding that the ground glass appearance and mucus plugs were due to bronchiectasis. All of that mucus being in bronchioles provides a good moist environment for MAC to proliferate. The mucus plugs in your bronchioles cause bronchioles to stretch and they can lose the ability to get rid of mucus. MAC and pneumonia and emphysema, for those who have it, makes all of this worse. I never expected to have good clear lungs again. Just trying to keep down the infectious bacteria and viral things that make it worse. I welcome any input someone can give on this. Like all of you, I too am just looking for answers. The MAC is something we get because our immune systems are already compromised. Everyone is exposed to MAC from our environment, but their bodies don't get sick from it.