My name is Emma, I’m 27 and I have had asthma since I was 2 years old. I was hospitalised quite a few times as a child but then I seemed to grow out of it through my teen years into my twenties. However, when I turned 25/had my daughter, my asthma seemed to come back. I would find triggers such as dust would set me off into mini attacks, I was taking my blue inhaler a lot more. It’s gradually got worse and worse until last week I had a severe attack and have been hospitalised for 5 days. I’ve never had asthma so bad and even now, after a week on steroids, nebulisers, antibiotics etc I am still extremely breathless although my peak flow went from 200 to 520. The point of my post is that they did a blood test in hospital and told me I had something called eosinophilic asthma which I had never heard of and when I google it I’m not really any the wiser (or very reassured!). I know googling is never a good idea....
I am going to be on steroids for another 14 days and have an appointment at the asthma clinic on 19th for a check up and another blood test (to see if my eosinophilia levels have dropped).
I was just wondering if anyone else had a similar experience or has been diagnosed with EA? I’m still so breathless and finding the smallest tasks hard I’m worried that my quality life will be different now.
I would be so grateful for any insight and advice anyone with a similar thing can give me!
Thanks
Emma
Written by
Emmalou91
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Hi & welcome to the forum. Eosinophilic asthma is described as a sub-type of asthma. It used to be that doctors thought that asthma was a single disease, but research shows nowadays that there are variants of it and lots of different causes (I imagine you've already worked that out though!).
There are quite a few people on here that I believe suffer with it & may be able to give you more specific information than I can, but also give the AsthmaUK nurses a ring on Monday & they will, I'm sure, be able to talk you through the diagnosis, what it means specifically for you and what your treatment & management options might be.
Thanks very much! I will ring the Asthma Nurses on Monday. I’ve always had asthma but never like this. It is all so new to me so it’s good to know there’s some support out there.
I too have severe brittle eosinophii asthma which was diagnosed Feb 2016....
Your practitioner will need to undertake blood tests or sputum samples to assess the activity in your lungs ....everyone reacts differently and treatment etc can vary ....I am currently on reslizumab and have just had a bad attack requiring ITU admission... please consult the asthma nurses on here on Monday to discuss further ....
Yeah I can imagine it is so different for each person, I guess I just have to go to my follow up appointments and find out more about my likely treatments etc. Will definitely ring the nurses on Monday for some advice too. Thanks!
I have Eosinophilic Asthma, I have been under the asthma clinic for 30+ years. I have been through all the inhalers and was on Omalizumab (Xolair) injections for 4 years and was swapped to Mepolizumab (Nucala) injections May 2017.
Eosinophilic asthma is normally confirmed after a FeNo test, depending on the value of Nitric Oxide in your breath would show how serious the inflammation is in your lungs.
Low = 0-25, High = 26-50, Serious = 50+. I am tested on this on each monthly visit before my injections. I was as high as 84 and I have been as low as 12, most recent figures have been between 40-50, being on Prednisolone will give a false low figure as they are given to reduce the inflamation.
I used to have severe attacks and be in hospital for 4-10 day spells 4-5 times a year and was on high medications,, 3x inhalers and nubulisers 4x a day + antibiotics and prednisolone. Since being on the injections I am off the nebs, prednisolone etc and I have not been in hospital for over 4 years now.
Wow, sound like those injections really work for you. They haven’t said a word about FeNo yet so I will definitely ask.
Thanks so much for sharing your experience. Can I ask - after one of your hospital stays, how long was recovery at home? I still feel like someone is sitting on my chest and everything is such hard work. This is day 6 of being on preds...no nebs now for 2 days and peak flow is fine. I know it’s probably different for everyone but just knowing that sometimes it takes a while to get back on your feet would be a comfort. thanks!
It does vary, they have kept me in hospital until my sats are 95+.
I self monitor at home, peak flow, sats & blood pressure which is what they do in hospital, because of this they have either let me home early, or not kept me in at all. They have also helped when seeing the nurse for my jabs or seeing they consultant at my reviews as they can see whether I have been good or not, it also shows that I don't panic if I get 1 odd dip in my figures, it was also useful to see if there was a pattern before a serious attack.
I can also act sooner rather than later as to whether I take myself to my GP or to the A&E and I can see improvements when I am on prednisolone, anitibiotics and nebulisers and shows when I am at suitable levels for going back to work.
Hi Emma just wanted to add that you might better to continue the nebs because they will continue to help if your tight chested, I would have thought pred would be helping by now. Also have you started to make your home asthma friendly eg dust mite covers on pillows , damp dust etc I know you said you had asthma as a child too so may know all the stuff to do . My health took a nose dive after my first child so hope you stabilise soon. X
Preds seemed to suddenly kick in overnight and I suddenly felt a lot better yesterday morning thank goodness - I can now get up and make myself a cup of tea without getting tight and losing my breath. Good advice on the home asthma proofing. I’ve just bought some allergy pillow cases actually. I’ll do anything I can to help prevent another episode. Xx
hi my name is dee sorry not having a good time of it. I am a brittle asthmatic ,i have had many i t u admissions and spent months at a time in hospital i had to learn to give myself iv ventolin untill i kept getting infections in my lines,i still have an infusion at home .everyone is different what works for me might not work for u and vice versa u will have ur low moments and good but if u need any help or advise good luck
Thanks Dee, really appreciate you sharing your experience. Sounds like you’ve really been through it. I’m recovering well now from the last hospital stay - I just hope it stays that way. I’m sure at my appointment next week I will have a much clearer view on things and a treatment plan moving forward. Looking forward to a bit of reassurance hopefully. Thanks again, so glad I found this forum x
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