How important is it to treat flare-ups and how do you know when?

Posted by annagh @annagh, Mar 14, 2023

I was diagnosed with bronchiectasis in 2016. In November 2022, a bronchoscopy came up with H-influenza and MAC. I was given Doxycycline for the H-influenza which stopped the constant violent coughing, took away the fatigue (which I was blaming on age!) and improved my breathing. The cough had been getting gradually worse over three years or so because my pulmonologist from 2019 on didn't schedule follow-ups, just said, "Call me if you need me," whatever that meant?? Since the CT scan "showed no significant change" from the one done in 2017, and I felt so good after the Doxycycline, I opted to watch and wait instead of going on the Big 3 as the doctor wanted.
Yesterday I saw him for follow-up and, as it happens, the last couple weeks my cough is back and getting worse. I've gone from almost no coughing and lungs feeling really clear to more and more frequent coughing and mucus coming up almost constantly. He was focused on the MAC and not waiting too long to treat, which I was happy to discuss, but I was also concerned about the cough and congestion. (I've been nebulizing 7% saline with Aerobika twice a day, and upped my walking.) He did give me another Rx for Doxycycline, whioch I'm now taking, but I do have questions.
I assume that any infection (flare-up/exacerbation) will potentially add to the bronchiectasis, which would mean it's important to treat. Is that right?
How do you decide when to call your pulmonologist?
Is sputum collecting and culturing important?
What questions should I be asking my doctor in regards to flare-ups?
(I have a low normal temp and didn't go much over 99 even when I had walking pneumonia, so that's not much of a clue in my case, just the coughing and mucus moving.)
My pulmo is giving me a referral to Dr. Kevin Winthrop, Infectious Disease, at Oregon Health and Science University, who studies MAC specifically and who is my doctor's go-to person on these things. Ironically it was a video Dr. Winthrop did last year that convinced me that with my stable CT scan I could wait for treatment. He's 5 1/2 hours away, and I'm sure it will be months before I get an appointment, but I'm looking forward to meeting him or someone on his team.

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Are these antibiotics by pill form or IV? I heard the IV had better results. I'm still waiting to see my Dr for this in June but I'm wondering if there's a choice between the pills and IV

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@scoop

When I leave a sputum culture they test for all of these each time. The acid fast culture is for the NTM/MAC and takes 30 days. Curious if anyone gets tested for anything else not on the list?
GRAM STAIN
LEGIONELLA CULTURE
FUNGAL CULTURE
ACID FAST SMEAR
ACID FAST CULTURE

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Hi scoop,
My Dr sent in my tests for all you listed but Legionella and just got the final results yesterday,
I'm positive for all. That sucks, but now waiting for my Dr appointment to find out how they want to treat all of this.

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@dgp4

Are these antibiotics by pill form or IV? I heard the IV had better results. I'm still waiting to see my Dr for this in June but I'm wondering if there's a choice between the pills and IV

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These antibiotics are usually pill form. If the disease doesn’t respond well to treatment with these then an inhaled antibiotic is added. I don’t know about IV.

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Has anyone had a side effect when taking the big 3 of significant leg swelling. I have been on the pills since 8/22, but was taken off ethambutal last month do to eye problems. It is worse in my right leg but is also in my left.

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@lauraadam2425

Has anyone had a side effect when taking the big 3 of significant leg swelling. I have been on the pills since 8/22, but was taken off ethambutal last month do to eye problems. It is worse in my right leg but is also in my left.

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Both Rifampin/Rifabutin and Azithromycin can cause swelling in the legs due to fluid retention.
If this is a new symptom for you, it should be reported to both your pulmonologist (or ID doc) and your primary care provider. Extra caution is indicated if you have a history of heart problems, high blood pressure or blood clots.
Also, if you have recently had a change in any other medications this could be an other cause.
Sue

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@sueinmn

Both Rifampin/Rifabutin and Azithromycin can cause swelling in the legs due to fluid retention.
If this is a new symptom for you, it should be reported to both your pulmonologist (or ID doc) and your primary care provider. Extra caution is indicated if you have a history of heart problems, high blood pressure or blood clots.
Also, if you have recently had a change in any other medications this could be an other cause.
Sue

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Thank you Sue, I see my pulmonologist next week and my PC the following week so will followup with them. There are so many side effects from the medications you don't know if it is the pills or something else.

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