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Changing diagnosis to severe

My current exacerbation started February 12, 2021, which was the last time I was able to go to work. Had an ER visit March 1, got the same old line “your sats are good and I don’t hear any wheezing”. Got more steroids, mag sulfate drip, discharged home. I have seen my PCP once, pulmonologist visit #3 is tomorrow. I was reading the notes from my pulmonology follow-up last week (March 17). I have been classified as moderate persistent asthma, well controlled, for quite some time. My last really bad exacerbation was in June of 2019. I read the new diagnosis which was “severe persistent asthma, not controlled, oral steroid dependent. That felt like a punch in the gut when I realized it doesn’t get any uglier than that. Wow. The current exacerbation comes after a period of 10 glorious months where I had no asthma issues at all, had stopped my Spiriva and was tapering off Singulair. Caught a head cold which started this long cycle of flares. Been on Prednisone for a month now, the current taper has two more weeks. This cycle of prednisone usage has been tougher than any I’ve ever been on. Insomnia, sweating, fatigue, and weight gain. From October of 2019 to July 2020, I managed to lose 60 pounds, achieved my healthy weight, and was doing well on maintenance. So the 20 pounds I have gained in the past three weeks is just heartbreaking for me. I can’t take care of my kids, can’t go to work, no paid leave available. It’s just a really tough season for me. Oh, and I got my first dose of Dupixent last Wednesday. I don’t seem to have eosinophilic asthma phenotype, but that new classification with “uncontrolled” and “oral steroid dependent” in the gruesome title qualified me for Dupixent. Praying insurance covers the cost and that it helps me get back to my life. So depressed, isolated, lonely at times, and the sleepless nights are long and scary. Thanks for reading and best wishes, friends.

  1. , so sorry you are going through this! It's always hard to deal with an asthma exacerbation, especially after going so long without any issues. I feel for you. If you are comfortable sharing, did your healthcare provider take you off your Spiriva and Singulair, or did you stop on your own? Generally, the vast majority of people would remain on medication even after seeing their symptoms disappear -- that is a sign that they've achieved good asthma control and would then go on to maintain that using their medication regimen.

    We are here to support you as you taper your steroids -- that is truly no fun, and you are always welcome to vent here if you want someone to talk to. We are happy to listen. In the meantime, try to remember that you have gotten through this before, and you can do it again. The same can be said for your commendable weight loss. But I know how disappointed you must feel, too. Try to be gentle with yourself, okay? Sending a hug to you.

    -Melissa, team

    1. Thank you so much for your kind response! And I was working closely with my pulmonologist when trying to reduce those meds last summer. At the time we agreed the control seemed pretty durable and we’re willing to try. So I tapered Spiriva and started Singulair every other day, with instructions to start them both again at the first sign of control starting to slip. It only took about 2 weeks for that to happen, sadly. And since my post you replied to, the prednisone is now at 30 mg twice a day “for now”, like indefinitely, until this cycle of flares decides to move on. I just don’t seem to respond to steroids as well as some others. Some people can just have an asthma attack or a flare up, take those awful pills, and feel better pretty quick. That has only happened to me twice. There’s a trigger (fake fog in a laser tag room, for example), airways shut down in minutes and I’m wheezing and gasping, take rescue meds, feel better, continue preventative rescue meds for a day or two, then back to normal. I WISH it was like that. But this long awful scenario is my most common presentation. It’s like 2 months of quarantine. It’s not safe for me to be around people due to the risk of catching any viral illness, not just COVID. I will be praying for my fellow asthmatics everywhere, for health and healing and endurance and just for peace in their bodies, minds, hearts, and souls. Thank you again. It helps to know I’m not alone.

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