Asthma serious but not serious enough???

Following my first adult flare up of asthma in 2007 I was eventually diagnosed with allergies to birch and grass pollen as well as dust mite. It took a year or so but eventually it was under reasonably good control. Until now. I was taken ill a month ago whilst touring Europe and following a and e visits in Austria and Venice I decided to fly back, thinking it was probably the unusual pollens over there that had triggered it. More fool me!

Since I've been back I've been to a and e 7 times (twice by ambulance) and I'm practically living at my gp surgery. They've carried out full blood count and RAST blood test (at my insistence) also had spirometery done with practice nurse (which showed as normal as I'd had to have half a dozen shots of ventolin to get me over to the docs). Still waiting for rast test results but I know they can give false negatives and false positives so I'm going to ask for skin prick tests as they were how I was diagnosed last time. I've been on symbicort 200/6 since last flare up only change is from 2x2 puffs to 4x2. Been on pred for 9 days but doc stopped it as it had no effect. In the last month I've been getting three or four hours sleep a night and I'm only getting by (if It can be called that by using 20-40 doses of ventolin a day.

I'm off to see gp to be referred to specialist but my real question is this; when I asked if I could be admitted to the acute assessment unit at my local hospital I was told that was only for emergencies, but I would argue that someone who can't sleep or function in anything like a normal way after previously being able to go to the gym three times a week and go on ten mile hikes, is an emergency. Especially after i was admitted to the same unit for quick investigation during my last flare up and this is much worse! Ifeel like I'm being left to hang in the wind.

Just hoping for others perspective on this. What are my options and am I being reasonable?

[Hidden]

What crazy doctor stopped the prednisolone as it was having no effect? It may not have been making you better very fast but it should have kept you out of A&E so many times and allowed you to function just a bit! I know this as I'm in the middle of my worst flare up - 8 tablets of prednisolone for 2 weeks had no effect and after 2 trips to A&E in one weekend they upped it to 12 tablets - a huge dose for a small person. Am now down at 9 tablets and have sort of stabilised, but am not allowed to drop it any further as I'm still having attacks, still waking each night and finding it exhausting to walk to the doctors etc. Waiting for a referral too. You NEED something more - I'd ask to go back on the prednisolone - maybe a higher dose - I am not a great fan of it - see my other posts - but needs must!

[Hidden]

Hi Jonester,

That all sounds pretty nasty, and the uncertainty etc doesn't help! Clearly as you say something is going on and it needs sorting asap - would agree you need to see a consultant but also you don't want to be waiting for outpatients as all these trips to A&E are not ideal. No idea about the acute assessment unit I'm afraid or what your options are there, but if it happened before during a flare-up it's clearly not a completely off the wall idea.

I'd give the AUK nurses (number top left) a ring asap as they are generally very helpful, have lots of time to listen and should be able to tell you what your options are, plus then you can say they told you to do it and they have the weight of expertise behind them!

Meanwhile, is your GP good? Wondering if they can do something for the moment; it might take a bit of time to have an effect but if the Symbicort is doing something at least, they can perhaps up that by putting you on the 400/12 version? I'm on 400/12 3 puffs twice a day and while it doesn't quite have the magic effect I was hoping it seems to be a little better on that than 2x2 a day, so might be worth asking about? And can look into add-ons like montelukast for the longer term - works well for some people, not for others but can discuss it.

Also, obviously this would be up to the dr but I can see what Jennyc means with the pred...I'm not on as high a dose as she is - just reducing from 2 weeks at 40mg - but it is working for me this time and for some reason when I had it last year it didn't seem to do as much (that was one week at 40mg then reducing). I get more and more confused by what's going on with me (as do the drs lol) but I was surprised by how effective the pred is being this time even if it is evil in parts, so perhaps it's still an option - another question ask the AUK nurses before you see GP?

Good luck with it all, really hope you get somewhere soon and no more trips to A&E.

[Hidden]

Hi

Thanks to both of you for replying. Saw my gp this morning and he said no point upping the symbicort dose as informed didn't work that won't either. Not quite sure I follow his logic there as they not the exact same med. He said it doesn't seem like typical asthma but that's not to say it isn't atypical asthma. He's sending me to consultant but he thinks it's anxiety (that old chestnut) and wants me to try anxiety meds. To which I said no chance. If it was anxiety I wouldn't be waking up short of breath at the same time EVERY night surely? I'm never sure what typical asthma is meant to mean when we all can have different symptoms. As I never wheeze unless I have an infection i grow tired of a doc putting down the stethoscope and saying 'chest is nice and clear' as if that's the alpha and omega of asthma!

At least I'm feeling slightly better today and not sucking on ventolin every five minutes. Thanks again for the replies, it may only be an Internet forum but it's nice to have the feeling you're not entirely alone.

[Hidden]

HI again,

You're very welcome, glad you're feeling better! Minus the ambulance trips (my lungs prefer to annoy me just short of this point which is lucky), your experience sounds rather like mine so I do get what you mean about not feeling alone. This forum is good for that as there are several other 'atypical asthmatics' on here who've run into issues with no wheeze etc - although I would hate to think any of my doctors might read the rubbish I spout at times, some of which may be anonymous rants about the more annoying of them (have better ones now), I also think it would be good for some of them to read these posts and see how many of us there are with oddly similar symptoms! I know what you mean about the 'chest nice and clear' thing grrr.

Anyway rant over... glad your GP has agreed to the referral even if he's saying it's anxiety. I was told the same thing to begin with, feel I've made progress that they are NOT saying that any more and appear to be listening to what I do say (I also felt this was a cop-out and why would I wake up every morning short of breath but not really get it in the afternoon no matter how stressed I was or wasn't?) I would suggest, other than giving the AUK nurses a call, that you see another GP in the practice as I found having a good one makes a big difference even when you also see a consultant, but it can be trial and error. Mine hit on stuff that worked when I'd gone round and round with the usual and nothing had worked.

I also used to think steroids didn't work for me, and they sort of didn't but maybe they weren't the right dose or something? Because now they're certainly doing something, so persistence can pay off even if they are a bit evil - no, you don't want to be on them if they really don't work at all and it's not asthma, but they can help if it is, even just to improve things a bit, and you want someone who will consider all the options and combinations as there are definitely more out there. And if it's unnecessary meds they worry about, you probably don't want to be on anti-anxiety ones either unless there's a good reason!

Good luck with the referral, hope you don't have to wait too long and get something sorted meanwhile.

[Hidden]

Hi Jonester,

I'm glad you're feeling a bit better and that they're referring you. The stethoscope and wheeze thing is infuriating, I know. I don't wheeze unless its time for A&E. It must be annoying for them to say its anxiety though - of course asthma makes you anxious when you wake up unable to breathe night after night, but its not all in your head - how patronising!

I am just waiting for my referral on 8th Nov, but not very optimistically. I recognise the name as the man I saw last time, very dismissive man, who wrote an asthma action plan on a torn scrap of paper, getting all my peak flow parameters completely wrong so that if I'd followed his advice on when to start on prednisolone (at the level I'd normally call an ambulance) instead of my instincts, I would have probably died!

The important thing is to see different doctors and nurses at your surgery until you find one that seems to ""get it"", even if they are not an asthma specialist, it doesn't matter - once they are on you side then you will get sorted, and hopefully stay well! Good luck and keep getting better.