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Alternatives to inhaled steroids

Posted by melb0606 @melb0606, Dec 18, 2024

I have been on inhaled steroids to control my asthma for over 20 years. It works and i rarely need rescue inhalers. I have recently been diagnosed with non-TB mycobacterium infection which has caused a hole or cavitation in my lung. I am otherwise completely healthy. Rhe pulmonologist is thinking i may have been susceptible to the stubborn infection from longterm inhaled steroid use. I would like to get off it but am looking for alternatives with low risk of side effects. Any suggestions?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 19, 2024

@melb0606 Maybe...how is that for an answer. Some people with well-controlled asthma can manage on a long-term beta-agonist. This is really a good question for the pulmonologist, because it will depend on the severity of your asthma, the severity of your infection, any other health conditions, and which antibiotics they may choose to treat your cavitary NTM.

What did they suggest as an alternative? Were you also diagnosed with Bronchiectasis?

REPLY
melb0606 | @melb0606 | Dec 19, 2024

I was not diagnosed with bronchiectasis. I am also starting the big 3 for MAC tonight. At the moment the ID doc and the pulmonologist doc are focused on treating the infection, but i have been reading how, once cleared, there is risk of getting MAC again. I want to be sure that does not happen and the steroid hypothesis makes sense.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jan 17 9:51am

Hi, @melb0606 - since my appointment with my allergist this week, I am now trying out, at his suggestion, lowering one of my inhaled steroids (maintenance inhalers). This is because I'm doing so much better than before with my asthma due to taking mepolizumab (Nucala).

I asked if my inhalers are causing me any long-term damage, and the answer was essentially "no." But my allergist said he's a minimalist and prefers to see patients take less medications, if possible.

Have you decided if you will taper off your inhaled steroids? Did your pulmonologist have any recommendations about an alternate treatment or tapering off the inhaler or inhalers you're taking?

REPLY
otter2154 | @otter2154 | Jan 19 6:28am

I have adult onset asthma and forgot to pack my maintenance inhaler (Trelegy) for a long trip over Christmas. After a week without it I was fine and I haven’t taken it in two months (still doing well). So I’d also say maybe. My pulmo has suggested stopping the Trelegy on occasion just to see what my baseline symptoms are. My annual appointment is soon and will see what he says.

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1 reply
1murphyand5others | @1murphyand5others | Jan 29 3:45pm
In reply to @otter2154 "I have adult onset asthma and forgot to pack my maintenance inhaler (Trelegy) for a long..." + (show)
@otter2154

I have adult onset asthma and forgot to pack my maintenance inhaler (Trelegy) for a long trip over Christmas. After a week without it I was fine and I haven’t taken it in two months (still doing well). So I’d also say maybe. My pulmo has suggested stopping the Trelegy on occasion just to see what my baseline symptoms are. My annual appointment is soon and will see what he says.

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I also chose to stop taking Trelegy in 12/2024; had no symptoms for 3 years. Have continued with a pulmonologist. No adverse effects so far. In case symptoms developed he prescribed levalbuterol tartrate 45. I have always disliked winter weather despite living in Arizona desert. Love heat. Have replaced my primary provider of 4 years, with good results. Trelegy side effects include cataract surgery needed. Have ongoing care with cardiologist. Will wait and see.

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