Struggling with constant flares since xmas 🥴😔

[mylungshateme]

Hey fellow unicorns and lung buddies. Hope your all keeping as well and positive as you can with demanding twitchy lungs? So not posted for an age, cant even remember how far I got updated you al on my its asthma/ not asthma malarkey. But yea after 2nd opinions etc definitely asthma (mo surprise there as had it since 11) AN states again I definitely have eosinophilic asthma, severe allergic asthma uncontrolled and finally prove from physiotherapy no BPD anymore whoop. I completely reversed it by doing the dysfunctional breathing disorder (exercises on here there are links) anyway AN wants me on biologics there are 2 I meet criteria for this was Oct... saw cons dec as AN brought app forward as urgent he said "well we've tried everything you've been patient when I've stopped your meds, changed them been in an out of hot clinic I'm going to take you back to mdt for biologics" this was dec... since I've been on 5 lots of 40mg pred. Gp getting annoyed severe asthma consultant not acting. Emailed AN few weeks ago on last flare now on holiday by the sea which is normally good for my chest but not this time 🥴 day 2 back on pred unable to walk far at all, talk properly etc all the usual I'm starting to feel bloomin annoyed at my twitchy lungs like give me a break while on holibobs at least like? Few years ago used to walk miles on coastal paths yes I needed breaks but manageable. Now sometimes dont even realise I'm struggling as it's the norm my bf will say "you cant breathe properly let's go back or drive it's not worth it" I feel do bad he loves walking too but not like he can go as I don't have puff to chase around my now 4 year old either or try defeat him as we're normally dinosaurs or spiderman or other superheroes depending what takes his fancy on the day! I dont6even know why I'm writing this post tbf I suppose a bit of another dear diary! Although how long does it take a flippin mdt to decide on biologics? I'm going to call my cons I think as surely not 5 months to decide then theres a waiting list I mean seriously? Why make us suffer more than we have to? My gp has also said they will do a supporting letter. X😂😆

[mylungshateme]

So update - contacted GP he absolutely agrees this is not ideal and is writing to my cons today!

[Celie1]

Aw I feel for you! Nothing worse than the ups then downs of constant flare ups. Hope the Consultant gets his/her finger out soon and starts giving you the treatment you need. 🤞Take care x

[mylungshateme in reply to Celie1]

Thanks how are you these days?

[Celie1 in reply to mylungshateme]

I’ve been doing well thanks, since I was put on Azithromycin and slowly weaned off pred last June. I was beginning to think I was fixed and then I’ve had a flare recently. I thought it was tree pollen🤧 (although I have non allergic non eosinophilic asthma 🦄🤷🏻‍♀️) and had to give in to some pred. Just hoping it settles .

I’m nowhere near as bad as you though. Hope your appointment goes well today. Let us know how you get on. 🤞😊

[Jollygood]

Hi again mylungshatemeReally sorry to hear the last few months have been so rubbish. I thought you’d made some headway as I hadn’t seen you on here for a while! It’s frustrating isn’t it and it seems like such a long road. At least you are currently on the list for biologics. Please don’t apologise for ranting on here, we all understand. Fingers crossed you hear some good news about an appointment soon x

[mylungshateme in reply to Jollygood]

Hi I think it's just a constant bumpy road when it's not text book asthma unfortunately. I'm not on the waiting list for biologics I'm still waiting on what mdt decided so if I meet the criteria if so which ones, only then do you go on waiting list once mdt agree to try biologics. I've been here before my previous consultant said "my asthma was too complex" and referred me to severe asthma clinic for biologics but instead new consultant tried to say I don't have asthma so "2 years I've been jumping through hoops" consultant words! I'm actually going to ring consultant today see if it helps..

Its frustrating they don't actually listen to the individual suffering isn't it. I don't know how many times I've asked to be referred to allergy specialists but apparently its costs too much and no real need... hmmm 😆🤣😂 I have allergic asthma and esophillic asthma and react to things I dont even know! Hahaha x