where to go next?


I'm 20 and I've been diagnosed with asthma for the last 16 years, I've had various degrees of control over it throughout the years, ranging from needing salbutamol as needed, to multiple inhalers, tablets, steroids and hospital admissions. I'm diagnosed with mild asthma - the only numbers I have is fve1 at 69%, which means absolutely nothing to me and my IGE level is 410 and increasing. I have nothing else going on underneath my asthma but I have semi-frequent severe attacks.

I'm on seretide, salbutamol, omeprazole, gaviscon and cetirizine. I'm spiralling out of control with my asthma at the moment. I have a consultant who I'm seeing on the 30th, I'm not in intimidate danger at the moment with my asthma, I just don't think I can last till I see him without some sort of medical treatment.

where do I go next?

14 Replies

  • Welcome Emma Louise!

    Sorry to hear you are having such a difficult time!

    FEV1 is the amount of air you can blow out in one second of a forced exhalation. If your FEV1 is 69% it means that it is 69% of what would normally be expected for the average person of your gender, age, and height. ""normal"" is anything above 80% so 69% means you are below normal.

    IgE is a measure of how your body is reacting to allergens. Yours is much higher than normal, so it may explain why you are having such jumpy lungs.

    Your cons will probably have lots of ideas about ""what next"". is this your first time meeting with a consultant?

  • Thanks Beth.

    It's hopefully my final/discharge appointment with my cons, overall I am doing a lot better with my asthma control. I was started on singulair in 2010 by my GP and had a rough spell with repeated hospital admissions, sometimes up to 5-6 times in 2 weeks, this resulted into my cons referral after around 3 weeks of my first severe attack and hospital admission. in my first cons. appointment, I explained that singulair seemed to be doing more harm than good. I had a lot of breathing tests done, questioning on whether it was asthma and an ENT referral, once my tests had come back showing that it was asthma I was told I could stop taking singulair if I felt it was making me worse.

    I stopped taking singulair and seemed to improve, initially shaky, then improved to the point of maybe 6-8 hospital trips a year + maybe 2 courses of pred from my GP. for the last 2-3 months things have been slipping again, more so over the last 7-10 days. I've had a look around for the next treatment steps and it appears that things such as theophylline(?) are the next step if things like singulair don't help.

    would there be anything my GP can do in the meantime until I see my cons?

  • I've seen my GP today and saw a locum doctor who was absolutely lovely. she has given me 5 days of pred and 5 days of antibiotics. I'm just above my cut off point for needing to go to the hospital, in terms of my peak flow (peak flow is 260, cut off is 250) the doctor ho & hmm'd it for a few minutes and said to go the hospital if I get any worse or if I've not settled down after these meds to go back.

    how long does pred take to kick in usually?

  • Argh no Emma!! Hugs!

    Re being admitted to hospital, if admissions are pretty infrequent then it's probably better to go in sooner rather than later (I say about the infrequent as I tend to leave going in as admissions are currently happening every few days!) because it hopefully means a shorter stay, less treatment and being sorted out before being too ill.

    The pred question - it *should* start working pretty quickly!! I'd imagine you should be starting to improve by tomorrow on pred! Before I was on maintenance I would feel better after not too long!

    Do you have a chest infection atm which is exacerbating asthma?

    Really hope you feel better soon and avoid an admission

    Laura x

  • I'm kind of lucky in terms of what treatment I need in A&E, usually 2-3 nebs, pred, then a couple more nebs and I'm OK again. I usually get kept in overnight to make sure everything has fully settled down. I assumed that it was my hayfever which was causing my asthma to flare up but the doctor said it definitely sounds as if I have an infection going on. I'm not coughing anything up but I have a high temperature. I'm in pain but meh, will see if chest loosens up a bit & if not ring NHS 111 thing because at THIS moment in time, it doesn't seem like an A&E case.

  • Ugh fever. Hope you feel better soon, but if you don't I second getting help sooner rather than later.

  • Hope things pick up for you before needing an a&e visit xxx

  • Hi Emma Louise. Sorry you're having a rough time atm. Simpathies for the fever, I've had a fever and chest infection this week and I can recommend cool showers, paracetamol and quite a lot of ice cream ;). It's just so hot this week and I've really noticed when the paracetamol wears off.

    Theophylline could be a next step up in meds, but maybe there are other options first. What dose seretide are you on? Maybe it can be increased. Or there's an alternative to montelukast called zafirlukast I think. It might suit you better, although you might have the same problems with it as you've had with montelukast. Also switching to symbicort might be an option. There are lots of things to try to get better control and I hope you find one soon.

    You say you have no underlying problems, but you take omeprazole and gaviscon, which I guess is for GERD, is this fully under control? Also the hayfever may be upsetting your lungs so more/different hayfever meds might help.

    The time pred takes to help is different from person to person. It usually has an effect on me within a few hours, and better again after a second dose (sometimes I'll dip a bit before my second dose). The amount it helps for me also depends on severity of attack, continued presence or not of trigger, how long things have been worsening and the dose strength. I hope your pred kicks in soon. x

  • Hi.

    Sorry I haven't replied sooner, I thought I had done. I'm on seretide 250/50, I -think-, I'm usually on 1 puff twice a day but have doubled it to 2 puffs twice a day according to my asthma action plan.

    Pred seems to kick in BUT only seems to last maybe 14 hours or so till I'm back to square one again, if not in a worse situation than I started. I'm getting a tight chest, shortness of breath, speaking slightly affected(having to stop mid sentence to catch my breath) coughing, chest pain, pain between my shoulder blades, etc. At the moment I'm at my friends who lives about 15 mins walk from our local walk in centre, would it be worth calling in or wait till tomorrow and see my gp again?

    Again, it doesn't feel asthma-attack-ish enough to go A&E with although am not entirely sure what else anyone could do for me.

  • Hi sorry to hear you are struggling.

    I'm not sure about the walk in centre vs GP but of you are struggling today perhaps you should get help sooner rather than later. We don't have a walk in centre anymore as it was relaxed by urgent care which is part of a&e and send all asthma there but I do miss it for those I need some help advice now but not a&e situations which I am often in.

    Your description of pred sounds like I am if I haven't been able to get pred straight away (usually due to the fact that I rarely wheeze when with a doctor) where it takes longer than usual to kick in and then wears off when I stop taking it. The advice line told me that I should be going back just before the end of the course to see if I need another course before stopping. My GP then likes to prescribe a longer course with a very quick taper (5 days at the full dose and then taper by 1 tablet a day). I think this is because I used to be on maintance pred but it seems to work. Have you rung the advice line? I have always found them to be very good with things like this.

    Apologies if this has already been discussed (was going to post earlier in the week but was then ill myself) but is it just citirizine you take for hayfever? I ask this because I also have a high IgE and this year my cons focused a lot on treating the allergies (mainly hayfever) before the asthma which has helped a bit but I am getting really bad hayfever at the moment due to the ridiculous pollen count here. If you are not already, I would recommend a nasal spray too or maybe look at trying a different antihistamine.

    Finally, if you are still having problems, discuss this with your cons (even though it may not mean being discharged). I am still going through a long list of things my cons said could improve my asthma (tablets, inhalers etc) but I think it will take a while to find the right combination so am having to be patient.

    Take care

  • sorry I haven't replied sooner. I've been at a friends and my phone has been temperamental. :P

    I ended up going to the walk in centre last night cause my chest seemed to be getting worse, the doctor was the definition of useless.

    ""no wheeze - no asthma"", non-wheezer.

    ""you can speak properly"", stopping every 3 words to catch my breath.

    apparently the doctor couldn't increase my pred - I've been on a higher course before, hmm.

    didn't check my peak flow at all, no check of oxygen, mentioned my heart rate was fast and offered to send me to A&E?!

    I've either messed up with my pred or I've been given too much, either way, I have 2 tablets left which I plan on taking tomorrow morning and getting in to see my gp.

    I take citirizine for my hayfever, but I've got eyedrops and nose drops too. I can't remember the name of them though. if I can get into see my GP, I may ask if they could prescribe me something stronger in terms of antihistamines.

    I feel like I did on friday when the locum doctor said to me that I ""sound tight and seem to be struggling"", I don't want to go to OOH's though, because frankly, I don't know what they'd be able to do if they don't know me or my awkward case.

    anyone have any tips on drs appointment tomorrow? in my experience of being asthmatic, I think I need a longer course of pred, possibly a tapered course.

  • Hi Emma Louise,

    I find it helps to write down a list of all the symptoms and the impact this exacerbation is having ( eg, I'm breathless when I talk, that isn't normal for me, etc)

    Tell the GP that your current prescriptions aren't keeping you symptom free and ask what can be added in. Recent guidelines from NICE recommend Symbicort as the primary long acting preventer as trials have shown it is more effective than Seretide . There are also other inhaled corticosteroids that can be added in such as Ciclesonide (Advair). Liquid Piriton is fast acting and can give good relief, but can also make you sleepy. If you feel you need more steroid, ask them to prescribe it and ask whether the dose last time was appropriate. I used to have similar problems, I would take a short course at 30mg for 5/6 days , come off them and go back to square one until Asthma Uk Advice Line said its better to take a bigger dose (I take 40mg for 5/6 days). This hits it hard and fast and gets me better. Overall, you take less steroid this way rather than two or three corses at lower doses. Also, as the problem is under control faster, less chance of admission.

    At the end of the day, we know what it is like to live with the condition and the GP is a partner in helping us stay as well as we can so don't be afraid to stand your ground and ask for an explanation of the prescribing rationale and how it should work. Remember to ask if they prescribe anything new how long it should take to be effective and when you should come back if you are no better.

    Best of luck, hope it all goes well for you.


  • I think Kayla is spot on with this one:

    At the end of the day, we know what it is like to live with the condition and the GP is a partner in helping us stay as well as we can so don't be afraid to stand your ground and ask for an explanation of the prescribing rationale and how it should work. Remember to ask if they prescribe anything new how long it should take to be effective and when you should come back if you are no better.

    Hoping your appointment goes well!

  • aren't doctors supposed to try keep you out of hospital instead of saying ""if your asthma gets any worse, go to A&E"" and refuse to prescribe any steroids? ugh.

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