Who to contact for persistent symptoms?

So I am having a rough week with my lungs this week and have needed my reliever even day, usually around 4 doses but yesterday was 8. I am waking up in the morning feeling very tired and not at all refreshed so I feel that I am probably not sleeping well because of asthma during night (I want a sleep oximetry as nurse furby suggested however my doctor near my mums home was very offhand so I think I will wait for my regular GP at uni and pester them). Obviously not feeling too happy about all of this and I visited the asthma nurse today, PF was fine but I felt fine at that specific moment. Also, I don't feel that PF is very good indicator for me.

She basically told me that all asthmatics are struggling this summer which I did already know from this board. Then went on to tell me that I'm on max everything, no idea where this has come from! I am on symbicort SMART two puffs twice a day, montelukast and an anti-histamine and have salb in case I need it. So I don't really understand how this is max when there are so many other medicines etc (not that I want anything else going into me). She also gave me the usual ""if it carrys on contact someone"" well this was me contacting someone.

So basically I was wondering for something like this, would the helpline at the top of the page be useful? I haven't have an attack but I have found myself breathless and with a tight chest very, very often. Also running is such a struggle which usually I can just about manage (sometimes even fully manage woo).

I have two asthma nurses numbers from the hospital where my consultant is but when I have rang in the past they either dont pick up or have sounded rushed and I really don't want to bother anyone at a hospital.

8 Replies

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  • Unigirl - your asthma and frustrations sound so much like mine at the moment. I'm not sure I can offer much advice because you seem to be doing all the right things and I appreciate that it is difficult during the summer with different doctors. Could you get your doctors/asthma nurse at uni to give you a ring and discuss it with them? They might tell you to go to the local doctor but could offer some advice/explain your asthma to the other surgery if they 'get it'. (I did this at uni but for something other than asthma)

    On paper my asthma is very uncontrolled at the moment (I had 6 puffs of reliever today and thought that was a good day) but when I see the asthma nurse, I am often feeling fine (because I have taken my inhaler to get there)! I don't think they recognise how bad it is because I am not having major attacks (fortunately I respond very well to my reliever), After eight months of this, my asthma nurse is finally coming round to the fact that something is going on but it still takes me several visits to get pred. I even had one horrendous appointment with another nurse at my practice (the most senior one as it happens) who said that I wasn't wheezing, could take in sentences and so could not be having the symptoms I described. Needless to say, I haven't seen her again! If I go in because my action plan says I need to contact them (which they don't take that seriously because they didn't really want to do it) then I get I am not sure what we can do. Yesterday, I saw the duty doctor after speaking to the advice line because I thought I had had an asthma attack in the night (needed 8 puffs of reliever to sort it out) but they said that it couldn't have been an attack because my pf was only slightly less than normal and my SATs where fine.

    I would stay to stick with it - you know your asthma and that it is not right at the moment. I often feel like I am kicking up a fuss, wasting people's time, people think I am making it up etc which is awful but I know that it is not right. I have also found that nearly falling asleep on them does the job - a few months ago one doctor told me my chest was clear but I looked pale and tired so something must be up (I am very pale anyway and had had three hours sleep the night before doing a full day at work). In terms of meds, my experience is that the GP doesn't like me to be on lots because I am not having big attacks. They reluctantly prescribed Atrovent (as the cons suggested) and have considered theophylline but most appointments they go through it all and say they don't understand how I can still be having problems on so much. The cons suggested Flixotide to top up my Seretide when my asthma is bad but the GP said they didn't want to go there with so much steroid. The annoying thing is that the steroids are the only things that seem to work and as soon as I stop them I start struggling again.

    Sorry if I have waffled a bit - this is something I really struggle with too (and am frustrated about at the moment).You could give the advice line a ring. I have always found them to be very knowledge and easy to talk things like this through with - they were great yesterday even if they were initially a little puzzled that I have had asthma for so long and don't know what an actual attack is! If you are confident, you could then use the information they give you to go back to the doctors and they have pointed me in the direction of information on the site to take (the page on steroid tablets when they thought I was being undertreated with steroids so my airways were not having chance to recover).

    Hope you are feeling better soon.

  • Hi unigirl,

    You are right in that there is a lot of other stuff out there to treat asthma, however since my care being under a consultant now (as is yours!) I find the gp very reluctant to try/add/take away anything. When do you next see your consultant? I am supposed to see mine every few weeks (intervals depending on how busy they are I guess) but end up seeing a cons pretty regularly as I end up in hosp way too often atm!! So my meds are constantly being changed and added to!!

    If you're worried, perhaps you could try and bring your apt forwards?

    Laura x

  • Kayla, if I'm honest although my GP at uni is better, I'm still in a little bit of a fight when I go there as it is difficultt to see same GP twice as they get booked up so quickly, they have 4 sites so they all move around from week to week and other such things. So I usually have to battle with them when I am struggling as I seem very composed (although I am dying inside) and usually they don't catch me at a particularly bad moment.

    I know exactly how you feel about the nurse saying that.

    I rang the advice line, the woman was very helpful and she made me laugh. Was saying that I could get my chest listened to however if they don't hear anything there and then, they will simply send me away stating ""you are fine"". I said shes hit the nail on the head there, I have this problem all of the time!! She suggested oral steriods to which I said I was given them by my consultant in March to take at my discretion as and when I need them. (I was very impressed with this as I like being in control and I'm not going to take them for fun, no one likes insomnia and insane munchies!!) She said book an appointment for next week for me to discuss if I need more after the 5days worth I have. Although I reckon i'll have a fight on my hands there too, the docs near my mums don't listen and I only go there for repeat presciptions and because they have records of my asthma.

    I am very tired today after a bad night last night so my apologies for the incoherence of it all.

    Kayla, I also feel like I;m kicking up a fuss and many people like to make out like i'm over reacting so I know exactly how you feel. I feel like unless I'm having an attack it is treated as ""you are fine, go away"" but asthma can affect you without neceassairly having an attack for ex constant tight chest like me this week. This was another thing the nurse on the phone said, that she doesnt like people saying ""asthma attack"" as it can affect you in so many ways.

    Laura, my cons appointment isnt til Oct at this rate, the hospital is so popular so I don't think I can bring it forward. I think GPs always act like theres nothing left to give me and never want to give me steroids, only hopsital and cons have done this.

    All in all very glad I rang AUK nurse and I will start taking oral steriods for 5 days.

  • All in all very glad I rang AUK nurse and I will start taking oral steriods for 5 days.

    I'm glad they helped - I have always found them so helpful even if they just confirm what I know! It is good that you have been given the steroids to start yourself - this is something I asked about once but didn't get very far with. The closest I have got is the suggestion from my cons about a Flixotide to add to Seretide when symptomatic and even then the doctor wouldn't give me that much steroids!

    On the plus side my GP gave me something new to try today, recognising that the persistent symptoms are a problem - even if it was the this is clutching at straws and may not work but let's give it a try!

    Hope the steroids are starting to work so you get a better nights sleep.

  • I know what you mean, it is nice to have a back up and I felt that she understood fully what I was saying and wasn't offhand with me like so many others are. She also helped me feel confident about my decision.

    What is the new thing that your GP gave you? I am glad that he is listening. Now I am worried that when I use my pred up I won't be able to get any more to back me up. Obviously I don't want to take them but I like having them to give me control. Also my cons likes me to have it in case my PF really drops, in case of needing ambulance I would take pred whilst waiting. I know it would take a while to kick in but it is so I can take them as soon as possible. So might have an argument on my hands at the GPs on wed.

    Thank you, I hope they work too!

  • Also I do not know Flixotide, is this inhaled steriods?

  • Yes my GP is quite good. Like you, they are part of a large practice over 4 sites but I have started going across town to see her if necessary. She is the only one who seems to 'get it' when it comes to persistent symptoms and doesn't ever argue that I don't need pred (she knows that I wouldn't ask for it if I didn't need it - especially as it makes me feel so sick). We are going to try Spiriva as Atrovent seems to work for me during the day but not helping at night (Spiriva is a similar med but longer acting). It will be much easier to manage as I found it quite easy to forget to take the Atrovent four times a day. It is part of a long list of more uncommon but might work things my cons sent my GP to try before I was discharged (I have also tried Intal and Tilade which helped a bit but I still had symptoms). My GP went through the list of different inhalers I have tried and it was huge (over the years, I have also been through most of the combination inhalers). Unfortunately, the only thing that has really worked was pred but they (and I) don't want to go down the maintenance pred route again (was on it about ten years ago when my asthma was much worse in terms of life threatening attacks). Flixotide is the steroid part of Seretide - I can't take any more Seretide due to the LABA so would have to add the extra steroid component separately.

    If the cons recommended the pred, then I can't see the GP not prescribing it again.

    Take care

  • I think I will start trying to follow the docs I like around, however if I am having trouble its very tempting to use their walk in service which means I can see a GP that day (with my surgery) or wait two weeks or whenever they feel like fitting me in with a random doc. That is good that she knows not to argue over pred. I woke up at 6am today to take mine with a banana following advice I read on a thread the other week, that way when it comes to tonight hopefully I won't have insomnia. It makes you feel sick? I just get the insomnia and crazy munchies but I'm not on it for long so I like to indulge myself. I feel like I have tried a long list of inhalers but in reality I bet its around 4 diff ones over 2 years. Does the LABA wreck havoc with your heart or something? If so thats not good, when I have palps its very uncomfortable and keeps me awake at night.

    you take care too

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