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Deciding to discontinue meds
I had an initial appointment with a new provider today as my prior ID physician left his practice. Upon reviewing my records, in particular the CT scan report she questioned whether I should have started on the big 3. I was referred to the ID Dr following a positive culture from a bronchoscopy however the vague radiology report was not conclusive. I was clear as of February 2025 (started meds in October 2024) so was scheduled to stay on treatment until February 2026. I will continue with nebulizing and the vest but not antibiotics along with follow up and monitoring. I’m uncertain about stopping suddenly but since I have had side effects, some of which she said can be permanent if I continue along with an up to 50% chance of recurrence even if I were to take them through the expected 12 month time period, it seems to be the best approach. Hopefully watch and wait will work.
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Hi Sue,
Are your exacerbations due to MAC, or other causes? Have you been tested lately to see if you are still positive for MAC? Also, how often do you get CT's?
You're very encouraging!
Thank you!
Kathy
I’m doing the watch and wait after terrible side effects of the Big 3, especially Rifampin. I’m not sure how long I can continue this, as I’m not able to do the airway clearance. (It inflamed my lungs so badly that they discontinued that, as well)
I hope to try it again, with a very low dose of the saline, but scheduled for foot surgery next week and want to hold off until after that.
It’s such a personal journey for everyone. I’m hoping and praying for new meds or treatments to become available, but I’m 71 and know these trials take years.
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1 ReactionFirst, my exacerbations begin with a virus - COVID last September, a cold before that.
I get CT's once every 18-24 months. If my situation changes, the frequency will increase.
I have submitted 8-9 sputum specimens in the past 3 years. Only one was adequate to do a culture, it was negative. I have a standing order, just cannot seem to produce 3 samples in 5-6 days, which is what my pulmo and lab want. If nothing happens soon, we will induce a specimen in October or December just to be sure.
5 years is great and very encouraging for all of us. I sure hope you can produce a sample before Oct/Nov. I don't have that problem, I think mostly due to my allergies and reactive airway disease-there's always something. Good luck!
Kathy
Can’t they send you for a broncocospy? Could take samples and do a lavage while in there.
Great question. I did have one in February but the ID did say they may repeat “at some point”. I imagine after a repeat CT scan in September and follow up visit, based on results and symptoms she may make that recommendation then. Additional GERD testing was also mentioned which I think could be quite beneficial.
The policy by my docs is no bronchoscopy without symptoms or a worsening CT and I wholeheartedly agree. Bronchoscopy is interventional medicine, and carries risks of bleeding and infection. I am content not knowing unless I have health changes saying that I should be concerned.
It's a ridiculous thing to "hope" for, but I hope our current bad air quality is enough to get me coughing up enough sputum for a culture. I could have done it last night, but was too tired from working outside in the heat, humidity & smoke (I didn't realize the smoke had moved in until I saw the sunset - it got here a day early.) No outdoor fun for me today, just going N95 masked on a few errands.