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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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lilianna | @lilianna | Oct 6 9:11am
In reply to @crepass "@catfish3012 . The big thing is that I can deep breathe without coughing. I’m able to..." + (show)
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@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.

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@crepass do you cough less and did you notice any side effects or something different such as dry throat

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lilianna | @lilianna | Oct 6 9:17am

I started 25 mg brinsupri last Saturday and observe how it goes day by day

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crepass | @crepass | Oct 6 9:40am
In reply to @irenea8 "@crepass are you saying when you stopped mucinex you had less mucus? And you incorporated postural..." + (show)
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@crepass
are you saying when you stopped mucinex you had less mucus? And you incorporated postural drainage and self percussion?

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@irenea8 no, sorry that was unclear. Last week I went to pulmonologist.(day 30 of brinsupri), I had already noticed a big drop in amount of mucus coming up with ACT and nebs. So I asked her about need for mucinex as a “useful “ medication in this particular case. She told me she was not recommending mucinex for most of her bronchiectasis patients. (not connected with brinsupri). I’m sorry I did not ask her why because I had always found guafenesin helpful. My cough had also disappeared, so that’s why I had asked her. This week that I have been off mucinex, I have not noticed any change in “stickiness” or ease of coughing up mucus, just a continued decrease and lightness of mucus. If I have a return to any increase of any of these things, I will start back with guafenesin. (I have been doing postural drainage off and on for 4 years. this past fall and spring I was weaker with exacerbations, so did not do so much “postural drainage” stuff, but since may, I have been very consistent and find it helpful.

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crepass | @crepass | Oct 6 9:55am
In reply to @lilianna "@crepass do you cough less and did you notice any side effects or something different such..." + (show)
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@crepass do you cough less and did you notice any side effects or something different such as dry throat

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@lilianna I hardly cough at all. (I did start stiolto at the same time tho- I had developed copd from the BE)(i think that’s what my pulmonologist said happened). Before I started on brinsupri, I was sometimes doing ACT 3-4 x daily and at least 10-12 ricola a day(along with hot tea and having to eat very slowly, and you know all those things that make us cough). I still drink a lot of water. but my throat is not sore or dry.

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lilianna | @lilianna | Oct 6 10:41am
In reply to @crepass "@lilianna I hardly cough at all. (I did start stiolto at the same time tho- I..." + (show)
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@lilianna I hardly cough at all. (I did start stiolto at the same time tho- I had developed copd from the BE)(i think that’s what my pulmonologist said happened). Before I started on brinsupri, I was sometimes doing ACT 3-4 x daily and at least 10-12 ricola a day(along with hot tea and having to eat very slowly, and you know all those things that make us cough). I still drink a lot of water. but my throat is not sore or dry.

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@crepass I am so happy for you, that cough is terrible- you have to stay far from people so they don’t hate you when you cough.

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crepass | @crepass | Oct 6 11:46am
In reply to @lilianna "@crepass I am so happy for you, that cough is terrible- you have to stay far..." + (show)
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@crepass I am so happy for you, that cough is terrible- you have to stay far from people so they don’t hate you when you cough.

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@lilianna i used to be a nurse, so I tried to do “education “ about my coughing. In the last year or so, I’ve met some people with similar coughs doing this “education “ and hopefully helped them along on their journey.

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