(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I had the same problem when I started using 7% saline. Doc changed me to 3% and never had the bleed again

@ginak Hi Gina! How much blood did you cough up? I've had 2-3 TBS blood coughs twice, but I felt fine otherwise, and nothing ever came of it, other than that it was scary. I don't take any antibiotics, but recently started nebulizing 7%, based on what I've learned here. The more I hear of it, the more I think coughing up blood is just an annoying part of having brochiectasis/MAC, even when we have no other symptoms. Good luck! Lori

Gina - Scary for sure. I haven't had the blood/bloody mucus except when I was most ill, but the pulmonary nurse explained it as a sign of irritation, not of illness. Keep the positive thoughts!
Sue

@ginak I began seeing blood in my sputum and coughing up blood periodically a little over a year ago. It began with just a few threads when I coughed up some sputum and then began to be considerably more than that. I couldn't tell if it was coming from my lungs or draining from my sinuses. I still don't know for sure but had a complete ENT checkup which was clean. I was found to have pseudomonas and nocardia bacterias in my lungs as well as aspergillus fungus last October which could have contributed but again uncertain. I will say that while I was on my medication for the bacterias my bleeding stopped. I just began coughing up blood again a couple of weeks ago. It could be a reverse nose bleed. I have no idea. It just comes and goes but is very alarming when it happens. I nebulize 7% saline 2-3 times a day every day and did skip a treatment here and there while I was having the bloody sputum in hopes that would help. I don't have any comforting words to say except that you aren't alone and for me, I don't think it's at all serious. it's just another "thing" to write in my medical journal and keep an eye on. @lindam272

@lorifilipek It wasn't much. Probably total of 3 tablespoons. It always looks like to much more when mixed with saliva and mucus. I agree, very annoying, especially when you think you're feeling well.
Gina

@chattey2 I've been using the 7% for about a year now. I've only had the hemoptysis a few times since being Dx in 2016. I started with .9%, then went to 3%, then to the 7%. Oddly, I think I usually have it in late October early November and one other time in January. Maybe it has to do with the weather. Who knows.
Thanks for your input.
Gina

@ginak Hi I have had the bleeds also, just randomly, sometimes a few tblsp and sometimes teasps, just never know when its going to arrive. I had whooping cough a while ago and expected some bleeds because I was coughing so much, but I never bleed. I have had the bubbling up also, such a wierd feeling but it stops pretty quickly (half hour at most). My Dr has given me pills to stop bleeding in case I have alot of blood and said to ring the ambulance if there is more than 2 tblsp but as you say some is saliva so I would wait for more than 2 tblsp. Its awful but you kind of get used to it, its not very often. Take care Heather

Hi Terri - sorry it has taken a long time to reply.

Yes many of the meds used for NTMs can potentially cause heart side effects that usually get better after the drug has been ceased and leaves your system. BUT for people who are afraid of the meds - please understand that this is a RARE side effect. You are NOT likely to get it. Just have an ECG (EKG) from time to time to check on it.

When it does occur it is usually not too severe for people. For example, it usually only causes elongations of the QT wave up to 30 milliseconds of delay (up to around 470 or 475 ms).

It really only becomes a serious risk when it reaches 500 milliseconds of delay or longer -- which is what happened to me. But I also developed hypokalemia (very low potassium). That's also a rare side effect -- the NTM meds can do this by causing people to urinate out more potassium than normal.

I've been on these awful, stupid meds for 2.5 years now but just received new results -- unfortunately I still have the MAI.

At the start, I was a bit of an optimist and thought for sure I'd be in the 70% to 80% of people who seroconvert and get rid of MAC/MAI....but, as it turns out, I'm in the small treatment failure group instead.

I will be put on Aricayce when it and the special nebuliser is sent to my doctor in Australia from the USA. It's not approved or available yet in Australia. (But with everything going on in the U.S., this could be quite some time. My heart really goes out to everyone in the US right now. I pray for you every day).

Some of you have had good results from Aricayce -- I really hope the same happens for me.

Good luck to everyone, Annie @anniepie

I contacted a site where the BeyondAir company's Nitric Oxide trial is happening for people with refractory NTM disease that hasn't responded to treatment. (It's in Queensland, Australia. Other trial sites are in the USA I think).
But I found out that I'm not eligible to be included in the trial for several reasons.
Jennifer, this trial is being conducted because Nitric Oxide may increase treatment success for some people who don't seroconvert even after years of treatment for NTMs.
Annie

Good luck with this specialist appoinment tomorrow Heather.
Don't worry too much. The long QT could be transient -- I sure hope so.
It can be caused by many different medicines for all sorts of things -- so I'd check what you are taking now. (I know you seroconverted last year -- YAY ! So it shouldn't be any of the NTM meds you took. Long QT usually stops after NTM meds are ceased and they leave your system. That's many months ago now).
It is a rare side effect. But when long QT occurs from medicines it's usually not too severe for people. Often it only causes elongations of the heart's QT wave up to 30 milliseconds of delay (for example, up to around 470 or 480 ms).
It really only becomes a serious risk around 500 ms delay or longer — which is what happened to me.
(But I also developed hypokalemia -- very low potassium. That's also a rare side effect of the NTM meds).
Fingers crossed all is good now.
Please let us know.
Hugs from Annie x