Feeling a bit rubbish : Today I had an... - Asthma UK communi...

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Feeling a bit rubbish

Today I had an appointment with my asthma nurse. I’ve already had a few appointments with her this year due to inhalers changing etc but today was for a check up because I’ve been trying to stop a flare from flaring (if that makes sense?)

Anyway, I have a great relationship with my asthma nurse (she’s amazing) and she always commends me on how I do everything by the book and how I project manage my asthma. I’ve been flaring like crazy for a few months, have had 3 or 4 courses of pred and I’m still getting breathless pretty often- 61 puffs of salbutamol in 2 weeks.

For the first time ever today, I felt really vulnerable when she said to me “you’ve become too brittle for me to manage and I’m really worried.” She’s booked me in to see my GP first thing in the morning and is going to get my referral to the asthma specialists expedited.

I guess my downfall is my reliance and how I’ve just become used to being breathless. I also hate to make a fuss because I know there are people out there much worse off than I am. I’m not sure whether I’ve been too relaxed about my asthma but I’m feeling pretty stupid right now and a little confused.

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Sorry to hear your struggling

Asthma is ever changing and it may be that what you are taking simply isn't enough anymore.... 5 years ago I didn't need any asthma medication and could take ibuprofen.... now I cant touch any non steroidal anti inflammatory (including aspirin aparently) and I have share's in boots... 4-5 asthma medications a month (sometimes more)... crazy how it changes but it certainly does

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Thank you ☺️ It is a condition that really does change quickly- this is something I’m going to have to learn to respect. I have no idea what the next steps are (my immunologist has mentioned biological a few times this year) but I’m going to have to learn to be a lot more patient than I have been.

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With a bit of trial and error you should be able to control most if not all of your asthma symptoms

Sadly for me that means as time has gone one I've amassed quite a collection but there are lots of add-on therapies and different types of controller

Are you on a combination inhaler (contains a longer acting version of salbutamol, usually formoterol or salmeterol)?

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It’s the trial and error that’s making me impatient and I really know that I shouldn’t be- it’s just one of those things. The day I find a preventer that works, I’m going to do cartwheels haha.

I’m currently on a ridiculously high, off-licence dose of antihistamines, Montelukast, Relvar and (my best friend) Salbutamol. Prior to Relvar I had tried Fostair, Seretide and Clenil.

I have lots of triggers but I find that exposure to allergens make me really hypersensitive to everything else- I think this is why I struggle to stay controlled when the weather is going from extreme heat to rain.

If you don’t mind, do you mind me asking how long it took to eventually find a regime that suited you? ☺️

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I'm 5 years in and...

2 respiratory consultants

1 endocrine team

And more tests than I can count

Have you ever tried duoresp spirpmax/symbicort? (Same drug different brands)... that's quite a common inhaler for people with allergic asthma although I hear revlar is good

I also take high doses of anti histamines what is it your taking ?

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Be relieved that they are expediting your referral. Sounds like your AN has been very realistic. I hope you are able to get some semblance of stability soon x

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Absolutely- I’m so grateful for my asthma nurse, I don’t think I could manage my condition without her. She’s ace! I guess I was just caught off guard today by her concern because our appointments are usually so predictable and laid back. Fingers crossed that this expedited appointment comes soon 🙏🏽☺️

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I fully understand the shock element catching you off guard there.

I have to say on the whole the ANs have been brilliant in my experience. Only ever been one that I had no faith in whatsoever and she is a hospital one! She hasn’t got a clue! (Even my surgery AN says the sooner this hospital one retires, the better for all!)

The rest have all been amazing and my surgery one is fantastic. They generally go above and beyond. Had one GP say to her once though “your problem is you care too much about your patients!” 🤔🤪😳

Keeping everything crossed for a speedy appointment for you. X

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It’s so refreshing to hear people having great AN experiences. I really do feel spoilt sometimes when I hear of people having terrible experiences.

Oh wow! Fingers crossed the hospital one really does retire soon- hehe.

Thanks for the kind words 🤗

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I’m so guilty of ignoring my asthma when it gets bad too. I do think of all those out there who are much worse than me who need to see a dr. (Appointments with GP so hard to get at my surgery). After my latest flare which started with taking my blue more often, my new rule is get to the GP ASAP! You have a serious lung condition that needs monitoring closely. Period. Hope everything gets sorted out and you are well again soon. Being ill with asthma is just horrendous.

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That’s a great way to put it. I think I need to adopt that approach and be more frank with myself too. Thanks for your words of wisdom ☺️

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I am the same I used to feel guilty going to the drs when my asthma was flaring but after my AN told me that I was silly and people die from asthma everyday so 10mins of a gps time is better than that and did me an asthma plan which I follow as soon as I start feeling a bit rough although after my last flare I have ended up with suspected pleurisy and feel cross that the go didn’t listen to me when I told her I had an ache in the bottom of my lung which I believe was the start of the pleurisy as that seems to be where the infection is but I haven’t had a lung X-ray to verify it .I am so glad I have a good practice AN

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It’s so shocking to hear how many asthmatics avoid going to the GP out of fear of making a fuss. We’re a tolerant group of people aren’t we? :) It’s great to hear that you also have a great AN looking after you!

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I also used to actively avoid drs at all costs (had a bad experience and have autism never a good combination) it tool me years to build trust with my an again. I ignored a serious flare and tried to manage it myself which is not an advisable move. I now see my an every 3 months so i dont have a year without seeing her which completely freaked me out. Our gps send us to her as she is the asthma expert in the practice. She cares about us and actually listens when we say we are struggling even when peak flow and no wheeze there.

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I wish my AN was that understanding. She is a lovely person but during my latest flare (I had three asthma attacks in a month, which I controlled at home) she said that my PF was too high for oral steroids. She would only considered speaking to the dr about it if my PF was around 200. According to my asthma plan that she created, if I was at that level then I needed to call ambulance! She also given me some duff information about my medication on my asthma which I have actually ignored after speaking with my GP. I don’t think she really understands asthma or the medication.

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Thats rubbish when they dont understand. I think i am very lucky she lets me help make decisions about my asthma. I have an unusual genotype which means i cant take combination inhalers. She will after a flare regularly email the hospital for advice to save me going to them.

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She sounds like such a dream!

I can’t say that I actively avoid the doctors as such, I just tend to think “oh I’ll be fine” and “well I won’t start my steroids yet because I’m not that bad” and things like that. I must stop doing this and realise that even though I do find myself at the doctors quite a lot, it doesn’t mean that I can’t go in between that for acute flares. I’m my own worst enemy!

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That sounds familiar.. i worried that our nurse would give me a big telling off which she did but only because i had been avoiding her.. im not good with doctors or anything medical.. i had the scary couldnt catch my breath moment and ive learned that sometimes you need a little help xx

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I can relate. You just have to keep thinking prevention is always better than cure. Now I am thinking I’d rather go in and look like a fool if everything is ok than be really ill if I leave it. Sorry to hear that you have been unwell for such a long period of time. I just can’t imagine what that must be like. I’ve had three months of poorlyness while the medical establishment worked out what is actually wrong with me and it has been the worst 3 months of my adult life. Looking back I should have gone to GP at the very start, rather than just thinking it will pass

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Hindsight is such a wonderful thing!

3 months sounds awful too...I hope you’re on the mend or at least can see the light at the end of the tunnel? Having this conversation and seeing asthma in the news today just makes it all seem so much more real.

Hope you feel better soon 🤗

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Yes, I am feeling so much better now it has been established what the problem is and I am on the right treatment . Gone a whole month without an attack. Thank you

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Hi

Don’t be frightened or confused it could be a blessing that you have been referred to specialist services. I developed late onset asthma at 50 and it crept up on me more inhalers more pred and eventually I was diagnosed with eosinophilic asthma. I now have a fantastic team amazing consultant and have been on mepolizumab injections for nine months and they have changed my life. I hope that the same happens for you. Take care 😊

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Thank you :) I was recently discharged from my respiratory consultant to be referred. I really thought I could have been managed under general respiratory but was grateful to be referred on to a more specialist service. However, I just didn’t realise I was that bad...oh dear! My immunologist has mentioned biologicals a few times so I suspect that’s coming next.

It’s so reassuring when I hear of people that have found the treatment that works for them. I’m generally a pretty laid back person, I’m a problem solver by nature but it guilts me to admit that this process of trial and error is frustrating me now. I know that 18 months isn’t that long but I’m just so eager to feel better 🙈

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Has the asthma nurse used an incheck device to see if you are on the right inhaler for the way you breathe in?

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She has- she never lets me use a new device without my technique being checked and then she always has me back in before I order my next prescription to check it again ☺️

What I’ve found is that going from Fostair Nexthalher (which requires you to take in big breaths) to Relvar Ellipta device (which relies on you only taking a gentle breath) that it’s much easier to get a full dose in

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