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Advanced BE and refractory MAC treatment questions.
So new to this group. Glad I found a place to ask some questions.
I have advanced BE with cystic and varicous sections. Purulent secretions and refractory MAC. Time # 3 on the drug combo.
Even was on amakacin inhalation for a few months until I had several drug toxicity issues from vision to hearing issues. Stopped all meds for 6 months and luckily most of the issues resolved.
Just starting back on the 3 meds. And waiting to talk to the pulmonologist next week about the BE.
Having issues with oxygenation of 94% and just generally feeling exhausted all the time.
I’m under 60 and concerned this is the new normal.
Anything else I should be doing to feel better?
I’m walking the dog and trying to golf with a cart. So trying to be active. But I’m tired all the time.
Any words of wisdom?
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I don't know if this helps but my pulmonologist who specializes in BE etc. would say that 94% oxygen saturation is quite ok for someone with BE etc. I am on oxygen all the time now and he said as long as it is at least 90% it is ok. I do not think that would cause the exhaustion as much as infection would?
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1 ReactionGood to know. Thanks for the info. Talk to him next week.
Are you on treatment for the BE?
So far I’m just on MAC pills.
I wish I could answer your questions. I start Mac treatment in June. I’m getting all the testing done. Can you tell me what to expect for side effects by any chance?
The first two times I barely had any issues. A bit of an upset stomach and loose bowel movements for a few weeks. Then nothing.
This time they changed one med to rifambutin and having some back headaches and feel dizzy and crappy.
But my BE is significantly worse.
So might be that.
Hopefully you’ll will be like my first few times.
I usually have a 94% but lately, I've been asking MA to put monitor on my middle finger versus index, and I got a 95% on one visit, and the 2nd visit 96%. I never get a 96%, maybe it was just the monitor?