I'm a 29 year old asthmatic, I've just come out of hospital after a bad exacerbation I was admitted to hospital 4 times last year each stay atleast 2-6 weeks, my last admission was 6 months! As I had a couple of exacerbations whilst there and was taken back to ITU 🙄 i also have cardiac issues which dont help!, I was intubated in ITU three times last year. I am on the highest dose of Fostair I can be, montelukast and hace just been started on the spiriva respimat inhaler which im not sure if it's made any real difference, im currently on a weaning dose of pred but I really struggle to get completely off it and I normally end up back in hospital again within a week or so of being off it or sometimes when im on a low dose, my consultant doesn't want me on it permanently and I dont want to be either as the side effects ive suffered from it are awful and just add insult to injury, I'm now also taking another 4 types of meds to try and combat the damage the steroids are doing to me, I know without them I'd probably be dead. My consultant has now referred me to Leicester as apparently they have a "difficult asthma clinic" and may be able to help with my "brittle asthma" although it feels as though they are just passing the buck as my local hospital and consultant seem to be out of ideas what to do with me because I dont present they way the drs would expect and their ways of treating me I.e aminophylline infusion sent me into SVT and back to ITU I went!, so that's a no go now, I've been out now just about a month and I still feel tired, lethargic, achy and fed up the smallest tasks seem to be such hard work, people just assume that asthma is being a bit out of breath and a puff on your inhaler and you'll be fine, no-one else understands the physical and mental strain it puts on you and your family my poor mum has been told I may not make it more than once. I have a two nearly 3 year old little girl and I hate leaving her although she's with my mum and I know shes safe and well it breaks my heart leaving her she understands more than i give her credit for and needs reassurance that I'm not going back to hospital because last time it made her cry she told me that she lost me😞. I was just wondering if anyone else has seen any specialists or been to a different hospital for treatment, is it worth it? As they all seem to be running out of ideas as to what to do with me, is this just the way it is? And I've got to learn to just deal with it until it's the end of me?? Surely there is only so many times you can put your body through such strain and trauma before it all becomes too much??
Will it ever be easier??: I'm a 29 year... - Asthma Community ...
Will it ever be easier??
Hi
Sorry to hear how rough you’ve had it! Tbh I’m surprised you’re only just being referred to a specialist hosp! They can offer a lot more than locals including biological treatments if your eligible. At 27 I understand how much it can take over your life, especially when you’re in and out of hospital a lot (or in for SIX MONTHS!!! 😱)
I’m on a cocktail of drugs too, but honestly it’s biologicals which have been the most help in controlling my asthma!
I’d suggest talking to your local cons and discussion maintenance pred until you actually get to the specialist hosp - for me the bouncing on and off often created problems landing me back in hosp.
Just remember it can get better and strive for it! You’re still recovering so it’s normal to feel shattered or emotionally fragile, especially having been that bad and away from your baby for so long!
Hope you start to feel a little better soon x
Thank you,I will ask about a maintenance dose I never even thought of that! My brain seems to have turned to mush, im willing to try anything if it gives me the chance of living a normal life .x
Oh mush I understand! I didn’t either til RBH pointed out that I only lasted 2 days on 0 pred before rebounding back to 40. My maintenance aim currently is 10, and if I can stay they with no issues for 2 months we’ll start to reduce further. Haven’t managed it yet but I’m getting closer!
You still get the SE of pred but personally I get a lot less when I’m at 10 (I notice a big difference side effect and mood wise between 30 and 40 tbh). I’ve been told that I’m not allowed to reduce if I’m symptomatic so currently stuck at 25 (just dropped from 30 despite symptoms but been at 40 since 21/12/18 - 4/1 then 35 til 12/1 and really wanted to get a little lower to get more emotional control! 😅)
Try to work out what level you were most ‘comfortable’ at, lungs and side effect wise and ask about staying at that level!
Do you know what type of asthma you have? Atopic(allergic)/eosinophilic/non-eosinophilic? If you’re atopic or eosinophilic you may be eliagble for a biological which can be life changing - I went from 1-2 a&e/admissions a month to having days when I don’t need my ventolin so there definitely is help if you’re eligible!
A lot of people find that non-asthmatics (or non-severe asthmatics) struggle to understand what it’s like and how it impacts us and our family 😒. It shocks people when they discover I have a blue badge, because I can look absolutely fine, but if I get sick or it’s too cold I’m highly likely to be admitted on all the good drugs! It’s something to look into if you haven’t already. Definitely helps with the weekly winter shopping despite the odd looks and glares I occasionally get!
I haven't actually been told what type of asthmatic I am they all seem a bit stumped.
I manage to get to around 12.5 of pred then that seems to be my make or break point normally end up back in any lower and that's with them reducing as slowly as possible, I have no emotional control whatsoever my moods all over the place!😂, glad im not alone with that.
I've been told about biological treatments but I've got to take that up with the specialist hospital when my appointment eventually comes through,
I have a blue badge too and have recieved many dirty looks and a few nasty words off people because I dont look disabled to them! Cold weather really effects me and my asthma and I try not to go out if its too cold but I can't spend my life indoors hiding from the weather, breach bad to pollen too in the summer so I'd never go out lol x
Hey my emotional control today is so fragile I basically cried in the bear shop when I bought a Charlie bear 😅 - you’re definitely not alone there!
Maybe ask about maintaining there or at 15 if that’s the lowest you can go and remain stable?
You’re specialist centre will work out and tell you what type you and and discuss which biological to go for!
My lungs like autumn (September to be precise) - Spring cold/allergies, summer allergies/heat (last summer was horrid), winter cold/damp. My good month last year was October cause September was too hot 😒.
Trying to get my head in gear enough to organise for my GP appt later as I’ve just changed GP and going through the admin today 🙄 - been up since 5.30 cause I had a hosp appt 90miles away for 9.30 so had to catch the train etc - glad I finished filling out my paperwork yesterday! 🥴🤪😴
Haha oh no bless you luckily the specialist hospital is only about an hour and a half away! Strange I posted this today as just had a phone call from my consultant well his receptionist giving me my post admission appointment well actually they were moving it forward as originally I wasn't supposed to go until September! Useless!!
Sorry it's so rubbish for you. Mine is pretty rubbish (multiple admissions, on all sorts of meds, also don't present/respond classically) but not as severe as yours sounds. Also shocked you're only now being referred on!
I’m at Leicester’s difficult asthma clinic and have found them really helpful!
Even without the biologicals I’ve found them to be really good and thorough in terms of trying to go through all the factors that could contribute to symptoms!
I’m still uncontrolled even with a biological but I’m in a much better place than I was beforehand!
It’s definitely worth asking about maintenance pred too - even if just until you can get seen at Leicester as hopefully it might keep you a bit more stable until then (I know sometimes the wait for appointments can be pretty long).
So sorry to hear that your having such a tough time : my asthma is difficult and was referred to Glenfield in Leicester In
March of last year, if your not improving where you are then a specialist centre is where you want to be, they are the best in their field. They are beginning to pluck away at my asthma . All I can say is we are all individual, and there are lots of factors causing asthma and adding to it, and they will pluck away at it, and see if they can identify the root causes, if not at least find new ways of helping you deal with things - there are also a number of new drugs available to us these days. Fingers crossed for you they can work through your asthma and find something that will help you, lots of love to your little girl , my children are grown up and find it difficult to cope with the constant asthma attacks ,so she certainly is very brave xxxx. It must be hard to keep finding the energy to keep battling , but the new centre is light at the end of the tunnel xxx take care xxxx
Hi,
I feel for you. Definitely get referred to an asthma consultant. Some GPs don't know enough about Asthma. Once you find out the type of asthma you have and triggers it can be treated. Don't give up hope and good luck. It may be useful to make a diary
(feelings/asthma symptoms/activity). All the very best.
Hi,
As others have said I’m shocked you haven’t been referred to a specialist centre yet. You have been through such a stressful time I’m not surprised you are finding it so difficult to deal with. I would also encourage you to speak to Asthma U.K. nurses sometime as well. The suggestion about Prednisolone sounds a good idea too see what your consultant thinks. I think the impact asthma has on so many people is not understood especially those like yourself who have clearly been seriously unwell. Write down things you want to ask when you do go to the specialist hospital and take someone with you perhaps as support as an aide memoir.
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