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Living with Asthma
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Has anyone been diagnosed with e-asthma?

My asthma has gotten worse in my 50s but I have two known triggers: cats and nuts. Cats have always been a trigger and nuts are a new trigger. My gastroenterologist wanted to test me for EoE but my allergist doesn’t think I have it. I have seen a lot of advertisements about e-asthma and am curious if anyone has been diagnosed with it? What symptoms did you have? How is your medication for it working?

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Hi

I have both severe atopic asthma and severe eosinophilic asthma (diagnosed 2017 aged 25). I got to the point where I was in hospital every other week with an attack, had 9 life-threatening asthma attacks (following UK criteria) in 12 months, had constant daily symptoms and couldn’t always ID the trigger for an attack. I’d trigger from the normal exercise, dust allergy or animal dander, but I’d also be very severe issues as soon as I got ill (even if it was D+V and not chest related, or a very mild cold). I had issues in storms, or temp changes and my lungs hate the cold!

I’ve always had sinus issues and I’ve learnt that as soon as I have a sinus infection, it’s time to up the pred and get PRN antibiotics as my body loves to bounce infections from the sinuses to my chest (sometimes via UTIs too 😒)

Until July I was on xolair which helped a bit (reduced severity of attacks but not really the frequency) - stopped due to hypersensitive reaction. I’m now on mepolizumab injections which have really helped my symptoms (since starting end of September no asthma issues and only occasional daily symptoms - in the 2 month interim between xolair and mepo 8 hosp trips and 3 admissions totalling 10 nights in so massive improvement!), however stuggling with the ‘aches and pains’ side effects... if they don’t calm down by dose 3 I’ll ask to switch to reslizumab.

It’s definitely worth being tested IMO, esp as it’s just a BT. If it’s high then you can try the biologicals, if it’s not then you’ve ruled something out!

Hope that helps. Good luck x

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Wow, I have never met anyone with asthma so severe. I am so glad you found help and got it under control. How very scary. I really appreciate you sharing your story. What hypersensitive side effects did you experience on Xolair?

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Nah, I’m not that bad... I know people a lot worse off than me! I know I can get symptom free on the right drug combination and right time of year plus I have so far avoided intubation (a couple of close calls tho). I was more frustrated cause it put my life on hold - my 4 year masters degree turned into 7 years but I was to stubborn to pull out of it... I graduated this year, which I feel is due to the xolair 🎉! I’m happy now my life has started again so I can go to work and actually use what I’ve learnt! 😂

I started getting hives and angioedema on the xolair. It had a very bizarre timeframe tho so initially we blamed it on other things. I’d have the injections, 2 weeks later (to the day) swollen lips, 3 days after hives all over my body. It’s only when it happened 3 times in a row to increasing symptoms and the exact same pattern that we stopped it, and it hasn’t happen like that since. I do seem to be more prone to hives and angioedema now than I was before the xolair tho so waiting for an appt with the allergy clinic (good old NHS... it might take a while but at least it’s free- very important for a cash-strapped new graduate 😉).

Hope that helps x

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Thank you for sharing the side effects you experienced while on Xolair. They sound pretty serious. So I am glad you found a better Rx. Congratulations on your Master’s degree!!

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I have been diagnosed as having it. Most of the time, it feels like a elephant on my chest.

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I can’t imagine what that is like. I saw the pulmonologist and I am fortunate I do not have e-asthma. Are you taking anything that helps?

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I'm getting a shot Faserna, and in on 3 Inhailers. It is alot of.hitnand miss. I have good days, and bad.

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I hope you get some relief soon! Did you get diagnosed from a blood test for eosinophils or from a FeNO test? I found the FeNO test incredibly difficult to perform. I must have tried it 15 times before I finally got it. I think the nurse was going to give up on me if I didn't get it on the last try.

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I have done the FeNO test lots of times now- it’s a useful test for my doctor and me 🙂

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My doctor told me any score under 25 is normal or negative for inflamation in the lungs. Is there more to it than that? Do scores under 25 have meaning or do all scores from 0 - 24 mean the same thing?

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They did a blood test, and it was positive for it. I appreciate the kind words very much! I wish you well on this crazy journey!!

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How did the Faserna work for you? I have a choice between Xolair, Nucala, Faserna and DUPIXENT and I have no idea which one will work best. Thanks!

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