Has anyone else started a red dot with MAI meds?

Posted by roslynroslyn @roslynroslyn, Sep 29 1:56pm

After a month on meds, suffering from severe constipation and lack of sleep, I have now developed a red pinpoint body rash. (torso, legs and ankles too).
Anyone else experience that?

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bbeers | @bbeers | Oct 2 6:44am

In reply to @roslynroslyn "@scoop as you have helped me. My daughter just arrived. Maybe she can send a pic." + (show)

@roslynroslyn So sorry you are going through this. Which meds are you taking?

roslynroslyn | @roslynroslyn | Oct 2 10:47am

In reply to @bbeers "@roslynroslyn So sorry you are going through this. Which meds are you taking?" + (show)

@bbeers Azithromycin
Etibi (generic)
Rifampin

crepass | @crepass | Oct 3 9:45am

In reply to @cwal "@crepass Curious to know, Did the 2 drugs get rid of your MAC?" + (show)

@cwal yes, they did . but BE slowly got worse, next year I may say yes to a bronchoscopy. My doctor thinks there might be something at the root of that. but right now I am on week 6 of Brinsupri and feeling so much better, I just want to go on feeling better for as long as i can.

cwal | @cwal | Oct 3 3:11pm

In reply to @crepass "@cwal yes, they did . but BE slowly got worse, next year I may say yes..." + (show)

@crepass
Good to hear the Brinsupri is helping you to feel better! It is so hopeful to have something that can help us all with this disease!
Also good to hear that just the two drugs took care of your MAC. Perhaps in the future it will be possible to only take 2 drugs for MAC treatment.

catfish3012 | @catfish3012 | Oct 4 10:15am

In reply to @crepass "@cwal yes, they did . but BE slowly got worse, next year I may say yes..." + (show)

@crepass
Just curious....when you say feel better, in what aspect do you feel better?

crepass | @crepass | Oct 5 4:03pm

In reply to @catfish3012 "@crepass Just curious....when you say feel better, in what aspect do you feel better?" + (show)

@catfish3012 . The big thing is that I can deep breathe without coughing. I’m able to play ping pong at a senior center without running out to cough up a lot of sputum or constantly have a cough drop at my beck and call. I’m able to eat in public, because eating could be a trigger for mucus problems.(coughing up sputum). Definitely less fatigue, can play with grandkids. ( even tho they are much more careful this year to stay away if they are sick). I ‘m pretty sure the decreased mucus is a “real” thing. Still have to do airway clearance and 7% nacl nebs 2x daily . but get up much less sputum and very light compared to the last year. still keeping my fingers crossed as it’s only been 37 days.

catfish3012 | @catfish3012 | Oct 5 4:56pm

In reply to @crepass "@catfish3012 . The big thing is that I can deep breathe without coughing. I’m able to..." + (show)

I'm impressed...continue good health

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catfish3012 | @catfish3012 | Oct 5 4:58pm

In reply to @crepass "@catfish3012 . The big thing is that I can deep breathe without coughing. I’m able to..." + (show)

@crepass what else do you take/do every day for maintenance?

crepass | @crepass | Oct 5 5:56pm

In reply to @catfish3012 "@crepass what else do you take/do every day for maintenance?" + (show)

@catfish3012
hey, I did start stiolto(took place of albuterol q 4 hours)at about the same time. and am more faithful with azelastine and flonase nasal sprays. I actually stopped taking guafenesin 2 weeks ago ago because my pulmonologist said i should give it a try( she is a BE specialist.) and I had such a decrease in mucus. postural drainage with self percussion (because i didn’t want to get the vest) with other act ( huff and deep breaths after nebs and aerobika as shown on videos.) lots of water and cut down on dairy. wear a mask in enclosed spaces,and gardening.hmmm TMI?🙃