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using steroids and MAC

Posted by lilianna @lilianna, Jun 2 9:34am

I came across this article and found it educating. I, probably like many of you, am very reluctant to use steroids. Currently I am using budesonide inhaled which gives me additional anxiety because I am still taking MAC meds. This is the article; scan it and pick whats the most important to a regular patient. https://academic.oup.com/jid/article/225/4/627/6358021

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 2 5:39pm

@lilianna This study does seem to bear out the increased risks of ICS (inhaled corticosteroids.)
But after long consideration and discussions with my pulmonologist, we decided that the benefits to my overall health by adequately controlling my asthma outweighed the risk of NTM returning. First, poorly controlled asthma was causing almost daily episodes of shortness of breath and chest pain/pressure and serious lack of energy. Second I was nebbing levalbuterol 3 or more times a day and using a rescue inhaler in between, suffering frequent non-stop attacks leading to repeated courses of oral steroids. Third, I was NTM free for over two years with stable CT scans. Finally, in terms of quality of life and severity, my doc felt asthma was my primary risk and bronchiectasis second.
Now, 2 plus years on Symbicort, 2 asthma attacks requiring neb (both during respiratory virus), no Bronchiectasis exacerbations and no antibiotics. Also, episodes of shortness of breath and chest tightness ONLY with major exertion - no more stopping halfway up a flight of stairs. I continue daily airway clearance and twice weekly 7% saline to improve my odds of staying healthy.

So the takeaway, as with all things, is a full risk benefit analysis, and being willing to revisit and reevaluate if things don't work out as planned. Every one of us is different, and our treatment will be too.

Sue

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1 reply
lilianna | @lilianna | Jun 2 7:03pm
In reply to @sueinmn "@lilianna This study does seem to bear out the increased risks of ICS (inhaled corticosteroids.) But..." + (show)
@sueinmn

@lilianna This study does seem to bear out the increased risks of ICS (inhaled corticosteroids.)
But after long consideration and discussions with my pulmonologist, we decided that the benefits to my overall health by adequately controlling my asthma outweighed the risk of NTM returning. First, poorly controlled asthma was causing almost daily episodes of shortness of breath and chest pain/pressure and serious lack of energy. Second I was nebbing levalbuterol 3 or more times a day and using a rescue inhaler in between, suffering frequent non-stop attacks leading to repeated courses of oral steroids. Third, I was NTM free for over two years with stable CT scans. Finally, in terms of quality of life and severity, my doc felt asthma was my primary risk and bronchiectasis second.
Now, 2 plus years on Symbicort, 2 asthma attacks requiring neb (both during respiratory virus), no Bronchiectasis exacerbations and no antibiotics. Also, episodes of shortness of breath and chest tightness ONLY with major exertion - no more stopping halfway up a flight of stairs. I continue daily airway clearance and twice weekly 7% saline to improve my odds of staying healthy.

So the takeaway, as with all things, is a full risk benefit analysis, and being willing to revisit and reevaluate if things don't work out as planned. Every one of us is different, and our treatment will be too.

Sue

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You are absolutely right. I myself nebulize with Budesonide - it helps me with tight chest although not completely to be honest.

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