Hello everyone
I'm a lifelong asthmatic (42 now), had plenty of A&E visits as a child before my asthma stabilised as I got older. Then in my early twenties it got worse, I was put on Seretide and things improved. But I found if I went on hot foreign holidays my asthma got worse. Then found the same thing happening in summers in the UK, meaning taking Pred is a yearly occurrence for me in the summer, often 2-3 courses in June-July for the past 10 years. I was diagnosed with severe asthma in 2014 at another hospital. I take Seretide 500 twice a day and Montelukast. Last bad flare up was Sept-Nov when my asthma just wouldn't settle and ended up on 3 courses of steroids again.
Now my respiratory team wants to reduce my Seretide 500 twice a day to once a day. This is based on the fact that I've had two reversibility tests in two years and the reduction wasn't sufficient to count as asthma. I was tried on Xolair in 2021 and had no response. They refused to see me during my Sept flare-up saying I should see my GP and it couldn't be asthma as my PF wasn't dropping (bear in mind this a regional severe asthma service...)
Obviously I'm concerned that they are going off test results rather than my flare-ups. I've ended up with adrenal insufficiency due to my steroid use - currently trying to wean off - and this itself has had a massive impact on my life. I know it's likely I will need steroids again in the future without some type of biologic therapy. My eosinophil count has been a bit raised during flare-ups (0.3) but not enough it seems to warrant any further therapy.
I am really frustrated as the letters from the hospital in the last few months have veered from "no evidence of asthma" to "no evidence of severe asthma". I have an appointment in a few weeks with the consultant. When I asked him last time what it was if not asthma and he said "anxiety" which made me angry as I've had anxiety in the past and I know the difference. Why would anxiety would only flare up during high pollen/hot weather/foreign climbs?! I am feeling fobbed off because I don't fit into their box of what asthma is. Does anyone know of any other tests I can get to prove to them what is going on? my PF doesn't drop that much either so that's no help. FEV1 is usually early 80% range. the cool weather means I haven't had any steroids so far even though I've had times where I've used extra Salbutamol