Anyone have experience with bronchiectasis and Haemophilus influenzae?

Posted by annagh @annagh, Jan 20, 2023

I was diagnosed with bronchiectasis in 2016. My cough had gotten a lot worse over the last couple years, I was fatigued and what sputum I could catch was green. Also had a low grade fever, below 100. Bronchoscopy was done, H-influenza found and treated with Doxycyline in November. Fatigue is gone, cough improved, and sputum is clear. But at the 8 week point MAC culture came back positive. Pulmonologist wants me to start the big 3, in spite of the fact that my symptoms are better and my CT scan shows "no significant change" since last one in 2017. After watching videos (including one with Dr. Kevin Winthrop who my doc said he'd send me to if the big 3 doesn't work) I am declining. Doc is not happy about my choice, but will see me every 3 months. I am focusing on airway clearance and exercise, getting so much information about that here since he did not really discuss that with me. I am starting to cough a bit more and just read that H-influenza can also remain in the lungs. I am wondering if it is likely to flare up again. Thanks.

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@lauraadam2425

Hi, it's JJ or Jane. I have had mac for over a year and on the 3 big ones. I was wondering if anyone has had terrible itching, not a rash, just itching on different parts of the body. First started on hands then feet and legs, now on back and arms. What makes it worse is I am on blood thinner plavics for tia and leaves blood blisters when I scratch. Use cerave itch cream but often.

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Good morning - The Big 3 can bring on such a host of side effects, and itching does happen.
It can be a result of the Rifampin, or more seriously, it can mean one or more of the drugs may be affecting your liver. (Itching can be a symptom of impaired liver function.)
Have you brought it to your doctor's attention? Is your bloodwork being done frequently (at least every 3 months) to monitor live function?
Sue

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Yes, I have blood work regularly as well as sputim tests every 4-6 weeks. I am also do for my chest CT in 2 weeks, then a followup with my infectious disease Dr. I am going to bring this itching up to him. Thanks for the info.

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