Bleeding from MAC

Posted by ritapearl @ritapearl, Nov 8, 2021

Started big three 11/1/21,two days later bleed happened.Still have some 5 days later.I told pulmonologist and will get another call.I’m also very tired.Most responses on this topic are 2019. Any up to date advice.

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Sue, Volunteer Mentor | @sueinmn | Nov 8, 2021

Tired is to be expected with the big 3.
I never had a bleed, so cannot answer, but I would be concerned this early in treatment. My pulmonologist had me start one med each week for 3 consecutive weeks so he could have an idea which med was the issue.
Sue

Colleen Young, Connect Director | @colleenyoung | Nov 10, 2021

@ritapearl, allow me to bring @heathert @shooei and @ginak who have experienced bleeding with MAC treatment. Hopefully they can offer some advice.

Did you hear back from your pulmonologist? What did s/he recommend?

shooei | @shooei | Nov 10, 2021

I'm sorry @ritapearl - I always find bleeds a bit scary even if it is very small.
My bleeds were just from bronchiectasis and MAC itself. I have never had Big3 treatment so unfortunately I can't speak to that. On bleeding in general, my understanding is that our widened airways from the bronchiectasis damage and MAC in there, make those blood vessels so close to the surface and delicate/already irritated that it is not uncommon to get some bleeding. In general as long as it is a small amount of blood (less than a couple tablespoons), my pulmonologist will have me take a break from my saline (or go down to 3%) for a day just to let everything calm down. I would imagine those meds to be quite an irritant to our already delicate vessels!

Sorry I can't be more helpful. Hopefully your pulmonologist will give you some direction on how they want you to proceed!

ritapearl | @ritapearl | Nov 10, 2021

In reply to @colleenyoung "@ritapearl, allow me to bring @heathert @shooei and @ginak who have experienced bleeding with MAC treatment...." + (show)

Colleen and heather it helps to hear from people in the same boat.Between the bleeds and the big three I couldn’t function,actually had a fall.My pulmonologist from Rutgers University hospital told me to take a break from drugs,nebulizer and vest.I feel so much better but am not sure of what comes next( still some bleed after one week but improving)
Rita
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heathert | @heathert | Nov 10, 2021

@ritapearl so sorry you have experienced a bleed. I have been on the meds whilst having a bleed but think it comes from MAC or Bronc. They can go on for a while once started, I try not to exercise to vigorously(esp throwing my arms around) after a bleed, and I do not use my saline neb, so that they can stop, otherwise they keep coming .Heather