Hi all...firstly, I can't believe I haven't discovered this forum before! I've had asthma since I was 8 (that is to say, it was diagnosed when I was 8 - the doctor at the time said he thought I'd probably been undiagnosed for a couple of years prior to that) and I now also have 2 of my children diagnosed. I stumbled on this forum pretty much by accident when trying to research the SMART regime my asthma nurse has put me on, and couldn't really believe my luck.
Traditionally, my asthma has been pretty mild - although over the years I've been up and down the treatment ladder a few times I've had no hospital admissions and in fact after my 22nd birthday I only needed ventolin and no preventer for years - in fact until November 2010. In November 2010 I got a chest infection that saw my PF drop to 320, and took 2 courses of antibiotics and prednisolone to shift. Then I was still wheezy, so after another week of nighttime waking my GP gave me QVAR50, but that wasn't enough so he upped it to seretide 125, then 250, 2 puffs twice a day. That seemed to stabilise things for a bit, but the major stumbling block here is that I have subsequently been diagnosed with ME (obviously not just because of the asthma, but a combination of other health issues that you really all don't need to know about!) and this has really made my asthma unstable.
Over the last year I've gone through just about every inhaler combination possible I think, had several courses of pred, and spent a long time on Symbicort 400/12 before returning to Symbicort 200/6 (2 puffs twice a day), but on the SMART regime. I do still have my ventolin, but I'm just wondering - is anyone else on the SMART regime? How do you find it?
Currently, I am not doing so well. I got antibiotics and steroids on Christmas Eve because I had got to the point where I was barely sleeping for the wheezing and coughing, and talking made me cough let alone walking or climbing stairs. I had a 5-day course of both which finished on Saturday, and whilst my temperature has fallen a little (from 40.1 to 38.5) and I'm getting more sleep on a night, I still wake up wheezing at least once a night, uncomfortably hot but then shivering once the covers have been off for a little while, and I am still very breathless during the day. Walking, talking, climbing the stairs, all make me very breathless, and I'm relying on my Symbicort an awful lot but it doesn't seem to be taking the problem away for more than a few minutes at a time. Often I feel myself needing to take a deep breath even if I've just been sitting still, but doing so doesn't seem to bring much relief. Additionally, I can often hear my chest when I breathe and it both feels and sounds uncomfortably tight. I think I may need to ring my GP on Wednesday morning, but I'm not sure what else they can do for me. I have Symbicort, Ventolin, Singulair, anti-histamines and nasal spray and yet I still feel like this.
I've just read this back and I sound like such a moaner, and I do apologise. I'm just wondering if anyone else has any tips for what I should be doing now, because after 27 years with asthma I've suddenly become a little lost! Do you think it could be the SMART regime not agreeing with me? Or just a very long exacerbation? I'm of 2 minds about going to the GP as I always have the distinct feeling that because they can't hear first hand how I sound at 2am when I'm struggling to breathe that they will write me off as a an hysteric. But possibly this is just my paranoia - I've always been a bit sceptical about GPs!!
Anyway, thank you to anyone who can help me, and a happy new year to all of you!!
Hi and welcome to the forum. Don't feel that you've moaned, it sounds to me as if you're looking for ideas of what to do with your troublesome asthma. And if you feel you have moaned, don't worry this is the place to do it with no need for an appologie. We all need a bit of a rant sometimes with people that understand.
It's deffinately worth a visit to your GP on Wednesday. They may give you some more steroids and antibiotics to get you through this exacerbation. It sounds like you still have an infection if you've still got a temperature. It puzzles me that you only got a 5 day course of antibs as I thought it should be for 7 days. While you're at GPs on Wednesdat I'd suggest it's worth asking for a referal to your hospital respiratory team as it sounds like you've tried a few meds and they're not controlling your asthma. I hope your GP listens well and doesn't write you off as an hysteric. My GPs are great, listen well and they've never made me feel like I'm making up my night time symptoms etc. Sometimes I can be rubbish at night, but then when I see them I have a clear chest and good peak flow during the day, but they're really good at asking the right questions.
Let us know how you get on and I hope you can get sorted asap. x
Hi and welcome to the forum.
theres no need to apologise for ranting. we all do it sometimes so everyone on here is very sympathetic.
i agree with Lou that it defo sounds like you still have a. infection that is probably whats making your asthma wprse. so i would defo get another appointment with gp asap.
i do hope things improve for you soon and let us know how you get on
Rose xxx
Hello and welcome!
I would agree with Lou and Rose, its time to ask to be referred to a respiratory consultant.
There are stil lots of other meds that can be tried and the cons can also try to pinpoint your triggers a bit better too.
I am on the smart regime and ventolyn and find the ventolyn helps better when I'm more short of breath and wheezy but the symbicort helps if I catch my symptoms when my chest just feels tight.
Take care x
Youre not moaning
Sounds like you still have roaring infection and its pointless trying to stabilise your asthma without the underlying issue being properly treated. A chest infection will wreak havoc with asthma - are you managing to cough any sputum up? If so, the GP can send it off to ensure you are on the correct antibiotic for the bacterial infection you have.
Five days of ABX is standard now for many things - but to compare, I have to take a two week course at the first signs of infection because it affects my asthma so badly - this is where seeing a respiratory specialist can be helpful.
Explain to your GP that you still have a temperature, and other signs of remaining infection, and if you can, produce a sample for him
Whilst oral steroids may be useful, they will do nothing to treat the underlying reason for your asthma being worse (infection).
Youre not wasting anyones time, I hope you feel better soon.
Lynda
Happy New Year! I'm also new, having just discovered this wonderful site. I can identify with feeling out of one's element. At the moment I feel like I'm completely relearning how to deal with asthma.
I was using the SMART regime plus nasal spray for several years before my latest exacerbation. I really liked it, though it doesn't seem to be working for me right now. However, when I started it seven or so years ago, it was a game changer and the start of several years where I could all but forget about asthma.
Right now, like you I'm also working through a lengthy exacerbation. For me, it started at the end of last October with a cold. Although some parts of this exacerbation are familiar from my pre-Symbicort days, there are other parts that are new. I've needed a lot more medication than ever before. During exacerbations my lungs are always more prone to overreact, but this time round the reactions are stronger, and longer. For really the first time in my life, I've needed to go to urgent care because things were beyond what I knew how to deal with on my own or because my doctor wanted someone to see me right away rather than having me “manage” things or wait for the next appointment.
Has your doctor spent time ruling out things that look like asthma but aren't? Just because we have asthma doesn't mean we can't also have look alikes too. When this all started for me, my doctor put a lot of effort into ruling out acute illnesses that might cause similar symptoms. He did a chest x-ray in case his stethoscope missed pneumonia, a sinus x-ray to look for sinus infection, blood test to check for infection, even tested me for whooping cough (negative). In my case, we're still down to plain old asthma, but I think it was good that he checked because it would be awful to ratchet up asthma meds like oral steroids when the real problem might have been something else.
I also get the need to vent. For me at least, watching my asthma change on me in a more severe direction and also seem to fall back into some of the nastier patterns of the past (long hard to put down exacerbations) has been upsetting. I've needed to process my feelings and not just gather information and seek out solutions.
I hope things settle down soon for you soon. And in the meantime, welcome.
Thanks for your replies everyone, it's lovely to hear from people who understand exactly what it feels like!
To fill in a bit more background about me, I did actually have pneumonia last January, and my GP spent 2 weeks just giving me antibiotics without actually telling me it was pneumonia. I eventually found out when I went to see him one afternoon in total desperation after I'd spent the night awake coughing, with my chest feeling as though someone was sandpapering it from the inside and barely able to breathe and he just said ""well, you've got pneumonia, what do you expect?""! When I asked why he hadn't mentioned pneumonia before and just referred to it as a chest infection he said well, pneumonia is a chest infection! Yes, but a pretty specific sort of one I'd have thought, that you really need to know you have! And in the meantime, because I thought all I had was a run of the mill chest infection I'd been doing my normal daily routine - school runs, housework, cooking, cleaning etc, and I ended up with 1/3 of a collapsed lung. And even then I didn't get much help - I woke up one Saturday morning in total agony down my right hand side, couldn't breathe without a horrendous stabbing pain, couldn't even move without feeling as though someone was sticking a knife through my ribs. So we rang NHS Direct who put us through to the out of hours service who in turn made me an appointment at the local hospital with the OOH GP. She told me that I'd pulled a muscle from coughing ""too much"" and advised me to stop!! It was only when my x-ray results came back 5 days later that my GP was forced to ring and tell me that part of my lung had collapsed and I needed to spend a few days in bed.
So after all that my faith in doctors is pretty minimal - if they can't even spot a lung with hardly any breath sounds coming out of it as being worthy of a bit of attention, will a respiratory consultant be even more dismissive? Added to which, when I was first ill with ME, my GP spent 6 months trying to harass me into admitting I was just suffering from stress and needed a course of anti-depressants. I had to be almost hospitalised before he took me seriously. So I'm naturally cautious around doctors, don't really trust them, and automatically assume they think I'm a raging hypochondriac until they tell me differently!
Beth I do know just what you mean about having to process your feelings. I had 10 years where I could virtually forget about asthma and to be honest thought I'd all but outgrown it. I only needed my blue inhaler and even then only when I had a cold, infection or other illness. So this is all feeling pretty horrendous. I think this forum could be a lifeline
Regardless I suppose I will have to go back to the GP tomorrow and see what he says. But I'm already dreading it. Thanks for all your replies x
Wow. A years a long time to be sick. I'd also be upset. They really should have a course in doc-school titled “how to speak to your patient”. Sadly, I suspect they do and it doesn't work all that well.
I've had good and bad experiences with doctors. My current GP has done a great deal in making me more willing to believe a doctor can help, but I went though a long long period where I was all but ready to give up on doctors and thinking I had to deal with things on my own and just live with lack of solutions.
When I was in my late twenties and early thirties, after a time long running exacerbations would start taking on many of the characteristics of Chronic Fatigue Syndrome (CFS), as if my body just kind of gave up from fighting and not entirely winning.
Asthma and CFS/ME sorts of problems I think are particularly difficult for doctors. There are just so many things that create similar symptoms. Even with a proper diagnosis, there aren't necessarily cookbook solutions. Doctors have to make a lot of judgement calls and focus on problem solving rather than “pick a choice from column A and column B” sort of solutions.
Over time I've come to the conclusion that, when possible, one should select doctors based on their interpersonal and general problem solving skills, and not just their credentials or supposed expertise. I don't necessarily mean great bedside manner, but more the kinds of things you raise: does the doctor even have a clue when his words mean something different to himself and the patient? does she know how to communicate information in a timely manner? Does she know how to ask the right questions? If perplexed does he/she research the problem and discuss it with colleagues or just spoon out textbook answers?
Of course, choices often depend on where you live. I know when I was in grad school, it was pots luck who I ended up with at the clinic associated with the school. There were other options, but the wait lists were very long.
All I can suggest is be patient in your search for the right doctors. They are out there, even they sometimes seem to be hiding under rocks.
Beth
Hi and welcome MillieMoo! Happy New Year!
That is a lot to deal with. I do agree with the others that you should be going back to your GP and asking for them to do something else to treat the infection. And in the longer term, a referral would be a good idea, fairly soon. Have you also thought of ringing the AUK helpline (number top of the page?) I've rung them a fair few times over the last few years and have found them sympathetic, helpful and expert - and much better, on the whole, than many doctors at understanding asthma is not always 'textbook' (one of them was so reassuring and said 'oh you really aren't the only one at all to call me with these 'non-classic' symptoms'; she took the time to explain what peak flow is measuring and why it's not always accurate.)
I do know what you and Beth mean about worrying that you'll be seen as a hypochondriac though. I now have this worry with any doctor I don't know after 3 years or so struggling and not being diagnosed (although I had asthma as a child it 'went away' and this time is a bit odd, so I kept getting told it wasn't asthma despite my history and family history of it).
My GP, and another GP I saw, were great about believing me and trying to come up with solutions, but I also saw 2 consultants (discharged with 'post-viral cough and hyperventilation', moved, referred again, discharged with 'hyperventilation, probably due to anxiety' and some rather half-assed physio) before getting to another consultant who actually did listen. For various reasons I ended up at a specialist centre; I'm not that severe but they have been much better and less dismissive and prone to say it's anxiety because they can see I am not actually anxious; the consultant I was seeing 'alongside' them (admin muddle, I didn't really need to be seeing both but I was) was also good at listening to me most of the time. So I can completely understand why you'd be wary of seeing a consultant (my GP was not at all happy with the local one here who told me it was 'just' overbreathing, as he could see there was more going on, and he was much more open-minded and good at actually listening to what I said and thinking about it.) BUT there are some very good ones out there as well, and not all at the specialist centres!
This is a bit of a ramble but I just wanted to say hi and let you know you're not alone and I completely get where you're coming from about not wanting to see a doctor because you're worried about being dismissed - but please do. I've never needed A&E yet but I'm also massively put off the idea of going if I did need it because as a non-wheezer with peak flows that don't behave as expected all the time, I worry I'd be sent away even if this isn't the case!
Best of luck tomorrow with the GP and I would say perhaps ring the AUK nurses before as then you can have some 'expert advice' to back you up if the GP is unhelpful; sounds much better to say 'Asthma UK told me to do x' if they're sceptical.
In my case, I've never been dismissed. I've simply received delayed or inadequate care. I'm not a wheezer, so doctors that don't know asthma well, are often confused. This results in one of the following scenarios:
a) A&E context: doctor hears my verbal report of symptoms (burning feeling in lungs, using way too much effort to breathe). He sees a calm and relatively objective woman with no wheeze/clear chest with air moving. But her heart rate and blood pressure are up. Orders EKG to rule out heart attack, before giving me a nebulizer treatment. Meanwhile I'm having so much trouble breathing that they can only give me an EKG in an upright position (normally people lie down) or else I start coughing uncontrollably.
Truthfully, though in that case I am being given good care. They were doing the right thing to rule out heart attack. It is just frustrating to me given that I have a nebulizer at home and could have treated myself far more quickly.
I once asked after the “neb-wait-free to go” whether it was really necessary for me to have come in and I was told point blank that yes it was a good thing I had even though the treatment was “minor”. From his point of view it was still a moderate exacerbation (not minor – one should take my own downplaying with a grain of salt).
The thing is that doctors can't know in advance what will resolve on its own and what won't. They'd rather be making the decision than have people like us make it, not come in, and then find ourselves somewhere that help can't get to us in time when it turns out that we were wrong.
If there is a ""fear of"" element here, it might be that I like being in control and my very presence asking help from a doctor makes me feel less in control and more dependent on others. As a result I tend to be a *hypo* condriact and delay seeking help for as long as I can.
b) GP context: I present with a piss-in-your-pants bend-over-double cough that has been going on for two or more weeks and explain that this sort of cough historically is due to asthma. Doctor doesn't hear wheeze so doesn't feel comfortable assessing on his own (perhaps because he isn't particularly knowledgeable about asthma?) The cough is clearly a problem though, so the doctor simply rubber stamps the prescriptions of the previous doctor. That's fine if all I need is refills, but if I need a medication adjustment, it's no help at all.
c)Doctor wants to help, but just isn't all that creative and doesn't have new ideas.
Basically the reason I went ten years in my twenties and early thirties with “colds” that took several months to resolve was that a series of doctors either rubber stamped an increasingly old set of prescriptions or simply had no new ideas.
Even when I was complaining of fatigue, it was never attributed to anxiety or depression. Questions are of course asked – they have to be for screening purposes, but it just isn't part of how I come across I guess, so they get asked and then we move on. Still, that doesn't mean I got the care I needed, because complex problems need creativity, not rubber stamping what the last guy did.
The best thing you can do for your asthma is KEEP switching GP until somebody listens to you! Our 'trusted' family doctor allowed me to go from age 6 to 18 asthma worsening telling my mum to 'dust harder', not once did he suggest an allergy test even though we owned a cat, or mention that such a thing existed. Not once did he up my medication or suggest that such a thing was possible. When I went to university and saw the nurse in the midst of my life's worst exacerbation and for the first time in my life I was asked sensible questions about how I FELT, and when she told me that taking a reliever 'up to 5 times a day' as my previous doctors suggestions had extended to, did not constitute controlled asthma, well it was a revelation. Even my hospital consultants throughout my life didn't ask simple questions like if we owned a cat. If you tell somebody you can't breathe most of the time they should be concerned, end of, and even if you just find yourself a good nurse practitioner rather than a GP it will be the best thing you can do for your asthma. This rant: also over!!!
If you tell somebody you can't breathe most of the time they should be concerned, end of, and even if you just find yourself a good nurse practitioner rather than a GP it will be the best thing you can do for your asthma. This rant: also over!!!
I often see the nurse practitioner at my surgery and she's brilliant. She's everything that you expect/hope to get from a good medical practitioner. She's also got a great sense of humour, so appointments with her are often quite amusing.
Beth, you are lucky...I think my GP leapt on the stress bandwagon because he just couldn't believe that a mother of 5 children, 4 of whom were 5 and under, wasn't completely stressed out and suffering from belated postnatal depression. And this was despite the fact that I've never suffered from depression in my life, never been on anti-ds, never even had particularly bad baby blues. My health visitor even commented on how calm and relaxed I seemed for a mother of 5 young children, and told him that too, but it still made no difference.
Of course, I was simultaneously suffering from an asthma exacerbation and the onset of ME, so as well as my asthma there were a lot of other symptoms, but he only did 1 lot of blood tests and then when they all came back within normal limits he decided I was stressed and nothing would change his mind. I did spend several weeks going backwards and forwards complaining of nighttime waking, coughing that made me sick, wheezing and breathlessness after exercise and even while talking. usually, he would listen to my chest, say it was clear and ask me if I was stressed. I could have smacked him!! He perscribed me singulair but then told to stop taking it after just 4 days because he said it ""clearly wasn't doing much good""! It came to a head one day when he told me he couldn't find much evidence of asthma and I exploded and told him to give me his phone number so I could ring him at 3am when I was awake coughing and struggling to breathe so he could listen in and give his expert opinion! Oddly enough he backed down a bit after that, and at least he put me in touch with the asthma nurse who is lovely and far more knowledgable about asthma than he is!
To be fair, once the ME diagnosis was made he became a lot better and now he does listen properly and not accuse me of imagining my symptoms at least, but my recent medication changes have all been done via the asthma nurse and tbh I trust her opinion more! He has also been a LOT more eager to help since I had pneumonia...must be worried we will sue him if he messes up again!
Truthfully though, I feel so bad at the moment I can't wait for an appointment with the nurse, I'm going to have to see a GP as I know I'll be able to get an appointment tomorrow. I've now been ill with ME for 2 years and my asthma has been getting progressively worse for most of that time. I have to admit I'm finding it a bit hard to deal with, because at the back of my mind I keep wondering if my first hospital admission is just around the corner. Tonight, I'm sat on the sofa watching tv but I'm struggling for breath as though I'm trying to sprint through treacle and I've had to prop myself up with about 4 extra cushions in bed for the last few nights. I'm so glad I've found this forum as I think you have all helped me more in the last 24 hours than any doctor has been able to do in the last year!
And sdan4, we have a hamster, 2 guinea pigs, 2 chinchillas and 7 rabbits so I'm sure the animal hair/hay/sawdust are contributing to the state of my chest, but as you pointed out it was up to me to connect the dots on that one...the GP never mentioned it!
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so everyone on here is very sympathetic.
Well managed for 60 years now worsened
Ventolin vs Symbicort
Confused about action plan
Anyone have experience with symbicort? Being swapped to it as apparently they are trying to reduce salbutamol use? 
