Living with severe asthma, newly dignosed

[Mellypad]

Doing a research trial with Beaumont hospital Dublin for my asthma. The outcome is that I have severe asthma. Been very unwell for 9 years, on all the heavy medication but my asthma still affects me daily. Anyone with severe asthma, have any feedback on how you manage day to day. Exercise is one of my biggest triggers. The trial has been brillant cause they monitor my inhalers and are delighted with my technique and useage. On steride and spiriva. This month seems to be my best month so far as the weather is good. But generally I'm mirseable. Would love some advise or feedback. I'm trying to move forward and get a good work life balance. Just started back sailing and walk a little to work every day. Biggest problem I face is my local GP doesnt seem to be able to manage my asthma, waiting on a specialist since last August.

[d2read]

Hi, Mellypad,

Welcome to the community. I’m sorry about your asthma. I’ve had severe asthma all my life, but I watched what my mother went through when she developed it at 65. And although I know a great deal about asthma (and related medical complications and conditions), I am not a healthcare worker.

First let me say that I’m in the US, so names of medications may be different, and when you see a pulmonologist or allergist for evaluation, they may approach things a little differently than might be common in the US. But physicians are physicians everywhere - most respond favorably to patients who do a lot of research, are organized and committed to doing what they can to improve their health, and who gather useful data and bring thoughtful questions with them.

That’s the biggest factor in what I do to manage my asthma (I’ve written quite a bit about my rarer form of asthma that’s developed, caused by certain white blood cells called eosinophils - you can search for my name and read what I’ve written for some others). Learning all you can about the spectrum of lung/breathing conditions called “asthma” (it’s not a single condition the way they thought for so long). The more you learn, the less frightening the whole thing can be.

Second, you said your symptoms are primarily exercise-induced (what’s frequently called “triggered”). That’s actually less common - to have a single, biomechanical trigger in adult-onset (but that just means you may have some additional triggers that aren’t as obvious).

I have some ideas for you, but would like some more information. You talk about the hospital trial you are in (did you mean you are on a “steroid” and Spiriva?).

But you aren’t being seen and evaluated by a pulmonologist or allergist as part of that trial? If I were you, I would ask everyone at the hospital for help to be seen by a specialist, because you need a full workup, if you haven’t had one already, and what we in the US call an Asthma Action Plan.

You say you’ve been very sick for nine years, are on heavy medication - and it sounds as if it’s all frustrating and over-whelming. Can you tell us a little more about your other medication(s), how long you’ve been on them, and something about the impact this is still having on your quality of life? Any oral meds?

The fact that you have returned to sailing (what a wonderful hobby!) sounds to me as if you are making some small progress. Also keep in mind that most asthma medications have, among their less pleasant side effects, anxiety and depression. It’s not enough to cope with the damn breathing - the drugs often make you wonder if it’s hopeless!

It’s not.

More suggestions next time!

Debbie

[Ortho10]

I was changed from Seratide to a Budesonide inhaler called Pulmicort, and have felt much better for swapping.