I posted on here last week about the difficulty getting treatment for worsening symptoms (generally my asthma is worse at night and responds well to medication so I find that I have minimal symptoms when I have an appointment). I eventually got a late appointment with a sympathetic doctor who said that although my chest was clear, I was obviously tired and struggling and gave me pred (nearly a week after the start of symptoms).
I went to see the nurse today (not my usual nurse as I wanted to see someone quickly) as my PFs and symptoms have been getting worse since finishing the pred on Monday. I wanted to discuss an action plan too. However, I felt this was a wasted appointment for two reasons:
1) The nurse appeared to have the attitude that I was wasting her time
2) She was reluctant to do an action plan or treat my symptoms
When I said I was here about my asthma, her first response was ""Well you have seen several people about this so I don't know what you expect me to do"". Throughout the 15 minutes I got the impression that she thought I was either making it up, attention seeking or just stressed! She wasn't interested in my history, symptoms or PFs over time. She even said ""I have lots of people in here who are wheezy and have difficult talking, They are the people who need treatment"". I find this hard to take as I used to delay getting treatment until I realised (and was told by my consultant) that getting help sooner meant I needed less treatment to get it under control.
I took the opportunity to explain that I am seeing lots of people as I am unclear as to what to do when I first get symptoms. In the past I have been able to double my preventer straight away and avoided many flare ups. However, I am now on Seretide 500 which I have been told cannot be doubled. The nurse said I was controlled as I am responding to medication even though I have had to take Bricanyl 8 times since this morning (including once when I needed three doses). I was therefore told to carry on with what I am doing!
I really find this hard to accept as although I am controlling my symptoms, I am really restricting what I am doing and taking a lot of reliever (which is making me tachy). The problem now is that they are obviously looking at my records and thinking that something is going on as I am in so often. I still haven't got an action plan and have been left as it is until my hospital appointment on 30th July with the recommendation to find some help to manage stress (the only stress I have at the moment is getting someone to take my asthma seriously). I know I should really go back if my symptoms don't improve soon but am now scared to go.
I will ring the advice line tomorrow as I have always found them to be very helpful but was wondering if anyone has any experience in any of the above issues.
I have had a few annoying appointments and experiences, but generally always try to see the same GP now, because he takes me seriously and doesn't only rely on how I am when I am in the surgery.
Is there a GO at your surgery who you feel listens to you? If so could you book an appointment with him? The nurse is right about not being able to double the seretide, this is due to the LABA in it, and 1000mcg a day of it is a high dose of ICS, you can be on a higher dose of ICS, but that would probably have to be done under your respiratory consultant (you have one?). If you have an understanding GP, I'd try and see them. If you get worse over the BH weekend don't hesitate to go to OOH/A&E, I have always found that A&E prescribe pred when you have to go there.
Don't think I've been any help, just waffled!!
Laura x
Hi there,
I haven't experienced any of these problems in primary care (though I've had some rubbish paramedics and crappy A&E experiences), but that's all the more reason to post. I believe that my asthma nurse is probably exactly what they are supposed to be - which is a long way from what you received.
Mine has seen me since I joined the surgery over 5 years ago. At the beginning I was using my reliever at night a couple of times a week, and she was the first person who told me that the aim was to use preventers to make sure that my relievers went out of date long before I used them up. I was on becotide but only using a small dose as I thought my asthma was totally controlled. She wanted me down to less than one use of my reliever a week ideally (not counting taking a puff before exercise).
She also taught me to brush my teeth after using my steroid, and then introduced the spacer after I started having trouble with my voice.
There was one period of 12 months must have gone by where I didn't see her because things were stable - so she kept ringing until I went in!
I should stress that all of this was when my asthma was really pretty mild - only causing me problems if I had a chest infection or ate something I was allergic to. As I've had pred in the past she always wanted me to have at least the first couple of days of a course of steroids at home, and to take with me camping and so on, in case I had a flare in an inconvenient place or over a weekend. She took the time to explain to me exactly how the steroids work and the different scenarios where I might be best to take them.
Over the last 3 years my asthma has got progressively worse. She's rung me after every time I've had to go to hospital or seen the GP for a chest infection. She switched me to seretide, tried me on symbicort (which I didn't get on with), happily switched me back to seretide, has kept everything on repeat so I can easily get replacements, added in montelukast and has supported me in having a nebuliser at home.
I've had at least 3 written asthma plans since Xmas alone - as every time my situation changes she's happy to see me again to update it all.
Any time I start steroids I'm supposed to ring and leave a message and she rings me back and checks if I want to come in, and will make sure I see the GP or she consults with the GP if I need it. She's very encouraging about my willingness to take it seriously. I know I'm welcome to come in and use the surgery nebuliser if ever I'm unsure about whether one or two nebs will do it or whether I need hospital.
Oh - and she trained me to use my epi-pen, and always makes sure that I'm still confident about it.
She's also now my diabetes nurse and she's great about that as well (but then she would be, because it's the attitude to patients, not diseases that matters!)
It helps a great deal that she also has asthma and allergies.
I don't understand why your nurse wouldn't want to take this seriously. They get assessed on stats like what percentage of their asthma patients have attended for a review in the last X months.
You shouldn't need to wait until the end of July to have an action plan - it's just a plan, written on a card or some paper - it can be amended by your consultant later!
My consultant asked me all about whether I had a written asthma plan, how often I had reviews, what kind of things the asthma nurse did in those reviews and so on - he was very keen to check out whether they were doing it properly in primary care (they clearly are!) and it seems a bit daft of your asthma nurse to want your GP practice to look rubbish to the consultant. But hey ho!
Good luck - I hope the pred kicks in quickly for you,
Cx
Im also on my 3rd this year (from the hospital nurse). At present I don't have a Zone 2, but at least I know what I should be doing and when, and I also have a direct line to the nurse too. Its really important to know what you can/should do. If you cant get on with that nurse, is there another in the practise? If not, is there a GP you particularly get on with? I hope you get it sorted soon.
Thank you Sparkle, C and Laura,
There are a few sympathetic GPs at my surgery but there is usually a long list to see them. My GP of choice returns from holiday next week so think I will book an appointment to see him to discuss all the issues I've been having (hopefully I won't be made to feel like a fraud again). To be fair, I have seen the nurse I saw today before and she was very good then (although not for asthma) and my usual asthma nurse was very good until I had a flare up in January and now she just seems to be taking the stress rather than asthma stance (I am certainly not stressed although I have admitted that sometimes being SOB on your own at three in the morning can be scary).
Laura - I was the one who told the nurse that I can't double my Seretide as this is what she said I should have done before seeing her! My consultant changed me to Symbicort SMART at the beginning of the month to see if that helped (so I was only taking high doses when needed). However this coincided with the awful hay fever season and so she recommended I go back to Seretide until I see her again. It's just three months is quite a long time to wait. I'm spending the weekend with family (including my dad and sister who are a retired GP and FY2 doctor!) It's always reassuring to know you are not the only one!
C - your asthma nurse sounds like a dream. Can I borrow her? I had a great nurse when I was first diagnosed (as a child about 25 years ago). She taught me all about PFs, symptoms etc and helped me (as a 4 year old) to understand what asthma was all about. She did have quite severe asthma herself. I think it is because of this care that I have usually been able to control my asthma myself until it got worse about a year ago. The strange thing is that this nurse has been very understanding when I have seen her before (which happened to be after a severe allergic reaction when she was willing to take the time to go over epi pens etc which I had been using for years).
I do find it annoying that I am being told I am asking for help too often but no one is willing to advise me how to help myself with a written plan (even a more in depth chat would help at this stage). The closest I got today was being told to take my PF before taking Bricanyl to check I really do need it but when I asked where the threshold would be the reply was well if it is lower than you would expect (helpful as it has been lower than I would expect for weeks and Bricanyl is relieving the symptoms but not sorting it out long term) - rant over!
Thank you for your kind advice.
Kayla, your experience sounds sadly familiar...I have met people who've been like this and it really messes with my head as well as being hugely unhelpful! Surely the point is that if you are sitting there and NOT yet unable to speak but still having problems, the idea is to treat so you DON""T GET TO THAT POINT!! My impression of 'best practice' asthma management is that it's about 'fire prevention' not thinking that a few small fires in your house aren't a problem because if it starts spreading you can always call the fire brigade (and I have to say, if she's been seeing people who are that wheezy and having difficulty talking I hope she's been ringing an ambulance for them not trying to treat them herself - asthma nurse appts are hardly A&E so it is completely ridiculous for her to compare you with people who are clearly in need of urgent help at the point they've been seeing her.)
I don't have a plan either. I spend a lot of time either trying to get one or to get out of them what I can do in a flare-up - because like you I can't go any further with the preventer, I'm already on a lot of Symbicort and when I tried to drop down the result has not really been good. So the only option is pred - and my GP thinks that this is better given sooner rather than later to keep things under control before you need more of it for longer, but my now ex-cons is for some reason convinced that while I should expect to flare every winter and this is just part of asthmatic life, I will never need pred for it, and that while I should just accept that I am going to have flares, I am currently well controlled and could drop down medication (his definition of control doesn't seem to match with any other I've seen...).
When I rang the AUK nurse she suggested that I order one of the AUK plans and take it in when I see the cons, because it's harder for them to say no if you actually give them a template and ask them to fill it in (trying to go back to see old cons - horrendously complicated now with new NHS despite theoretically still being able to choose where you go. I feel really, really bad about what my GP is having to do but at the same time, they shouldn't say you have a choice and then make it so difficult to exercise your right! I often think I should just give up and not have a consultant but then my GP isn't really sure what to do with me and the AUK nurse at least thinks I should be under one so guess I'll persist - maybe will have to make cupcakes or something for GP for being amazing! If he doesn't get anywhere think I might just give up for now and hope I don't get any more flares.)
oops ramble there, not sure if it's helpful..but just to say yep, definitely ring the adviceline, see what they say, don't be worried about going back and although I've not tried it yet I'd say ordering a plan from AUK would be an idea as it probably is a lot harder for them to refuse to fill it in - though of course it needs to make sense; one which went strictly on PF would be no use to me, for example, and it sounds like you also need a properly personalised one.
EDIT just seen your latest - cross-post! ANd wanted to add - I feel the same, seems at times like I'm just being left to deal with it but not really told how. Every time I've rung the adviceline they've said it sounds like my medication is a bit of a jumble and I need to ask someone about whether it's the best combo for me and clarify certain points, but this never happens. I can understand my GP not being willing to do this as he has referred me (he's fantastic in general) but I feel like sometimes I just get the answer 'you're controlled' which a) is not exactly true and b) if I've been told I will get flares, I need to know what to do about them!
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KaylaCP - sorry about the rubbish appointment with the asthma nurse. You sound like you've gotten good advice over the years beginning in childhood and know your patterns. It never hurts to work to reduce stress (including stress as a reaction to being ill), but that won't solve the underlying health problem, only make it easier to bear. I can see that not getting help to keep an exacerbation from escalating would be stressful - ironic that the source of stress is telling you that it isn't asthma but stress.
I think it is really important that you continue to trust yourself and your intuitions despite the feedback you got from this appointment. I know it is hard though - I had a bad experience a few weeks ago with some of the doctors when I was in hospital and I'm still sorting through some of the emotional fall out from that three weeks later.
Stay strong - hope you get a better response when you see the ""good GP"".
Re: preventer : As others have said seretide can't be doubled because it contains two drugs: an ICS (inhaled corticossteroid) plus a LABA (long atcting brochodialator) , if you'd like to avoid oral steroids and instead double the inhaled preventer, you could ask your GP about prescribing a separate inhaler with just the ICS portion of seretide for use with exacerbations.
That said, I believe current thinking is that oral steroids rather than doubling the ICS is considered the preferred method these days for dealing with exacerbations. (Note: As in all things medical here, confirm anything with your GP and/or with other qualified sources. )
Kayla, your experience sounds sadly familiar...I have met people who've been like this and it really messes with my head as well as being hugely unhelpful! Surely the point is that if you are sitting there and NOT yet unable to speak but still having problems, the idea is to treat so you DON""T GET TO THAT POINT!! My impression of 'best practice' asthma management is that it's about 'fire prevention' not thinking that a few small fires in your house aren't a problem because if it starts spreading you can always call the fire brigade (and I have to say, if she's been seeing people who are that wheezy and having difficulty talking I hope she's been ringing an ambulance for them not trying to treat them herself - asthma nurse appts are hardly A&E so it is completely ridiculous for her to compare you with people who are clearly in need of urgent help at the point they've been seeing her.)
What a great image re: its ok to have a few fires in the house. So that add two more items for my fantasy asthma doctor/nurse education campaign:
a) Not all asthma wheezes
b) Personal best is PERSONAL
*** c) Asthma is variable - your patient probably has better data on her asthma than you do. She lives with it. You do not.
*** d) If you need to see a flare to believe it, you can't prevent it.
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Kayla, your experience sounds sadly familiar...I have met people who've been like this and it really messes with my head as well as being hugely unhelpful! Surely the point is that if you are sitting there and NOT yet unable to speak but still having problems, the idea is to treat so you DON""T GET TO THAT POINT!! My impression of 'best practice' asthma management is that it's about 'fire prevention' not thinking that a few small fires in your house aren't a problem because if it starts spreading you can always call the fire brigade (and I have to say, if she's been seeing people who are that wheezy and having difficulty talking I hope she's been ringing an ambulance for them not trying to treat them herself - asthma nurse appts are hardly A&E so it is completely ridiculous for her to compare you with people who are clearly in need of urgent help at the point they've been seeing her.)
What a great image re: its ok to have a few fires in the house. So that add two more items for my fantasy asthma doctor/nurse education campaign:
a) Not all asthma wheezes
b) Personal best is PERSONAL
*** c) Asthma is variable - your patient probably has better data on her asthma than you do. She lives with it. You do not.
*** d) If you need to see a flare to believe it, you can't prevent it.
This came to me on the spur of the moment but I like it. To me it does seem like saying 'oh well, it's only a chip pan fire, so no need to worry about putting it out - just ignore it and wait till the entire kitchen is on fire and the rest of the house is starting to fill with smoke and THEN you can call the fire brigade, though they have seen worse fires than that'. I imagine the process of asthma control as being rather like keeping the 'fire' inflammation controlled and not letting it spread.
Interesting re pred being preferred to doubling ICS. I am now on 2400 mcg of Symbicort total in a day. I am always getting told this is 'too much' and I can agree that it IS an awful lot and I shouldn't need it! However, when I've tried to reduce as suggested to 2 puffs twice a day instead of 3 and only have 3 in flares so I have somewhere to go, my lungs haven't liked it. Realistically, this means if I have a flare pred is the only place I can go, so interesting to hear it may be recommended anyway. Of course despite all my 'you should put the fires out' claim, when it comes to it I never know what to do when I am having a mild flare as I never feel like it's enough for pred, but experience tells me that unless I am able to stay in and do nothing for a week or so (I did have this over Christmas, was able to stay in), if I try to go about things as normal it will turn into a worse flare needing more pred; I just feel like I can't ask for it when I'm not that bad.
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Once again thank you for all your advice re ICS dosages/pred. There are so many different treatment options that it can all be very confusing which is the reason why I believe I need some kind of plan (especially with regards to getting help as several people have been quite unwilling to listen to my symptoms recently). It is quite worrying that I am finding it so hard at the moment as I would consider myself to be quite knowledgeable about asthma. I have had maintenance pred in the past but my consultant is reluctant to start this again (I did achieve few years of relative control since then after changing medications).
What a great image re: its ok to have a few fires in the house. So that add two more items for my fantasy asthma doctor/nurse education campaign:
a) Not all asthma wheezes
b) Personal best is PERSONAL
*** c) Asthma is variable - your patient probably has better data on her asthma than you do. She lives with it. You do not.
*** d) If you need to see a flare to believe it, you can't prevent it.
Beth I think this sounds like a great campaign. In fact the nurse that I spoke to on the advice line said that many doctors/nurses have very outdated and wrong views of asthma and your ideas sound very similar to what she was saying is good asthma care.
Anyway, the changeable weather and pollen has not helped this weekend (thought I would have to phone OOH). Luckily it is half term so I can take it relatively easily (sitting inside with the windows shut) as I am still cautious about asking for help. Of course if it gets any worse then I will phone for help (I am quite good at getting help to avoid huge problems).
Thank you once again for your replies. They have definitely given me some ideas to take to the appointment and help me to make the most of that precious 10 minutes.
Kayla
Thank you Philomela,
You have explained my feelings exactly (and I love the fire comparison too). I was actually told today that my asthma is controlled because I can take medication to stop the symptoms even though the GPs and consultants say that needing so much reliever is not good control! Also that I seem to know my symptoms and asthma well so should be able to deal with it myself. I have tried lots of different inhalers/combinations of medication and it always seems that they control my symptoms for a while and then I have flare up which sends me back to square one. My consultant now thinks that it is more allergy related and I think they are going to try and treat that more now (and the one thing my usual asthma nurse keeps saying is keeping taking the nasal spray and antihistamines).
The idea of taking an action plan also sounds like a good idea. I have seen an AUK one at work and it is quite simple to fill in so it shouldn't be a problem to do. I can't get to see my GP of choice until 3rd June so I might get one for then. I think my consultant will be more willing to discuss it as she generally is very good at seeing the bigger picture. She was the one who told me that while I cannot expect to be totally asthma free, I shouldn't be limiting my activities or taking lots of reliever just to get by.
I hope you manage to find a good consultant as like you say even though your GP is good, there is only so far they can go. I did really respect mine when he said that there are other things he could do but he doesn't know enough to prescribe them. My consultant has also worked really hard to get to the root of the problem rather than just treating the symptoms.
It's far from normal to double top dose seretide, but I do have a double dose, so 2000/200mcg per day. You could just double the ics part by adding flixotide so that you don't end up with loads of LABA. My asthma is usually much worse at night too. It's can be quite convincing (even if they just said ""your chest is clear"") if you have an all nighter after many nights of symptoms and then practically fall asleep on the GPs desk
Sounds like you should go for the app on 3rd June, or before if still struggling.
Thank you Lou,
I did used to take Symbicort and then Pulmicourt as an additional ICS and I think adding something else is on my consultants radar. She is just trying different combinations of medications at the moment but stopped them after my recent flare as she thought the hayfever season is not the best to be trying new things (this is my biggest trigger). I have found being exhausted does help them to listen to night time symptoms. In fact last Thursday the doctor said "" I don't mean to be rude but you do look awful!"" I think I am getting that way again now!
I have just spoken to the lovely nurse on the advice line who was brilliant at helping confirm that my thoughts about needing treatment was right. As much as I don't like pred, I cannot go on taking 12-16 puffs of Bricanyl a day (which the nurse told me I was to do as it does control the symptoms). She also told me about the things I need to talk to the doctor about and is sending me a sample action plan and some other bits. If only the nurses at my surgery could be so understanding and pratical!!
It's so fustrating knowing you're going downhill and that they don't always take you seriously!! But you're right, you shouldn't be using that much reliever. Glad auk line were good, I've found then helpful whenever I've rung!!
Today I've had my hair done and I didn't think about the aerosols etc so had an attack in there and then went for a walk in the wind/pollen with a friend later on. iI know I am spiralling downhill, gp surgery closes early on a fri, so couldn't book an appointment to see what gp would advise will have to see how it goes over the wkend.
Trying to get a plan is a good idea, gives you info of what you need when. Though I don't have one, just very strict instructions of when help is needed
Get well soon x
Im also one of the fortunate ones who has had a fantastic asthma nurse and GP. I used to have a direct line to the asthma nurse, and she would also ring me at home to check up on my if I was having a bad patch. Ironically now I dont see her, since I have a direct contact with the specialist nurse at the hospital, who discusses things with the MDT - this gives me open access to the ward providing they have a bed. Has made life so much easier and less stressful! Im going to have to change GP practices when we move and Im absolutely dreading it - I've had my current GP for 15 years and he's fab, the whole practice are.
I think pred being preferred is ONLY for acute flares - as maintance ICS is preferred because of no or minimal (if very high dose) systemic effects.
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I think pred being preferred is ONLY for acute flares - as maintance ICS is preferred because of no or minimal (if very high dose) systemic effects.
Sorry if I wasn't clear - that was what I meant, because I'm already on high-dose ICS but then have nowhere to go with that when I do flare.
Hi everyone,
I've just got back from seeing my preferred GP (after a few weeks wait as he has been on holiday) and so thought I would update. To be honest I'm not totally sure how the appointment went so hoping writing it on here will clarify how I feel about it too (don't think it will be a moan).
Positives: This is a GP who knows me and my asthma well, he listened carefully without dismissing the fact I had no wheeze and mainly nocturnal symptoms, he agreed that I can't just avoid pollen (as suggested by the nurse), he seems open minded (thinking that there are different things to try and even explained they had discussed me as a difficult case and thought about exploring reflux before they got the report from my consultant saying I was highly allergic- the nurse just said I was reviewed by the team), didn't mention stress after I said I really don't believe that is a cause and I felt very knowledgeable/in control thanks to all the advice on here (I went in with pfs, an app where I recorded all the times I took my reliever - symptoms, triggers, location, pf before and after if possible, dosage over how long, and evidence that my asthma is not that bad (only need 3-5 puffs of Bricanyl with a dry rather than productive cough) on days when I sit at home with all windows shut not doing much at all.
Negatives: He admitted to be totally out of his comfort zone (said he rarely prescribes Monteleukast unless he is sure it is allergic) in terms of asthma and hayfever medication (which one to focus on and the fact that he can't do this without advice-possibly looking at Theophylline), he needs to phone the consultant to discuss and then will phone me back sometime this week (I was hoping for the miracle cure today so I can get on - a bit optimistic I know), he said there was nothing wrong with averaging 12-14 puffs of Bricanyl a day with more and more needed at a time (it will only make me shaky), I forgot to ask if I could try another course of pred as I did improve when taking this a few weeks ago but then went back down again when I stopped (suggesting I left it too long before getting it/needed it for longer/needed a higher dose) and when I mentioned a plan he said the plan would be you are having these symptoms so come and see me and I would be sat here saying that I don't know what to do! He implied that I have little wriggle room in terms of increasing ICS etc and so a plan wouldn't help me (I also don't tend to need 999 or A&E because although I do have severe asthma, I tend to have symptoms over a longer period of time but which I can control using Bricanyl).
So all in all a mixed bag. I realise this is not helpful to anyone else but just thought it was important to share as everyone here helped so much in making it at least partially helpful!
HI Kayla,
No that is actually helpful because it's good to hear that someone else has the 'gradually developing' type. I don't think my asthma is severe - would call it moderate persistent - but it does tend to do that slow burn thing rather than 'omg attack get to A&E' kind of thing that others have (and I know some unlucky people get both). While I would hate to be in and out of hospital I agree with you that it is quite frustrating as no-one seems to know what to do if you are frequently above the 'get urgent help' level but still getting enough symptoms to make things difficult. My lungs sometimes like to play the game of taking me to the edge of 'get help' but not quite going over it -I know this should be a good thing but there have been times when I wish they'd just go a bit further so I'd actually know what to do and could feel justified in asking for help NOW. As it is when I go to OOH I tend to get them thinking that it's more of a long-term thing that they can't deal with rather than them dealing with the here and now (if they listen, otherwise it's the 'you have anxiety' line, blah blah). Not having been to A&E I don't know if they would do similar; maybe not.
Sorry, that's probs not helpful to you...but this all does sound familiar. I'm really surprised that he doesn't think there's a problem with you needing all that Bricanyl! Discussing it with the cons sounds like a good idea; my GP is often also stuck. But glad that he is listening to you and not trying to pin it all on stress or dismissing your concerns.
Re montelukast - it works well for me (could work even better but I definitely notice if I don't have it!) And when it was prescribed I didn't seem to have much of an allergic component (triggers more things like temperature, humidty, exercise, strong smells). Maybe more so now I seem to have developed mild hayfever - but then you have hayfever too, plus my GP felt that it was a good one for asthma where there is a strong exercise component as well - do you find exercise sets you off? It seems like it would be worth trying montelukast if you can ask for it - it might not work but it might help at least mean you don't have to sit still indoors just to get reasonable breathing.
Hope this somehow helps - I guess at least you know you're not alone!
Thank you Philomela,
I agree it is very helpful/reassuring to know that other people do have similar asthma patterns to you (I used to get quite concerned at being called difficult or unusual by GP!)
I have a long and complicated history with asthma and have been through practically every type but I am finding symptoms at the moment the most frustrating (this is probably that when I had severe asthma attacks and did end up in A&E I was a child/teenage and so my parents probably dealt with most of the doctors things etc). Although my official diagnosis is severe allergic asthma, I don't really consider myself severe as I know I can always control it (albeit on a lot of medication). My pf often drops to below 50% (last night it was 190 when pb is about 440) but my reliever works so the worst I go to is OOH (and by then my reliever has made a huge difference so just get the see your GP). I know what you mean by OOH as I usually get the ""I can't change your inhalers"", ""you are too complicated for us"" or the whole anxiety thing. The only times I have been to A&E recently (and know I must always go) is if I react to insect bites or tree nuts which is classed as anaphylactic shock and then there are no ifs and buts - lips start tingling, chest gets tight, face goes puffy = have piriton and inhaler, if still getting worse get epi-pen, dial 999. If you have had an epi-pen they have to treat you in case of secondary reaction and the fact that I am covered in hives and swelling is obviously a physical symptom. Although this is very scary, the treatment I get is also prompt and good (and I like the fact it is very black and white about what I need to do - one thing my asthma is certainly not).
Perhaps I didn't make it clear that he did prescribe me Montelukast years ago and find it very good (it is about the only asthma treatment that has stayed the same for several years). The consultant was hoping to try Xolair but I am too allergic (again I thought this was odd until I came on here). I don't find exercise is a trigger unless I am quite dodgy anyway (I regularly run and swim when my asthma is reasonably good and rarely need to treat asthma during this). Anyway we will see what the cons/GP says when he phones back (I hope he can sort it out today as I am getting very impatient with all the waiting and am back to work after half term tomorrow.
Ah I get you - hadn't realised you were already on montelukast, thought he didn't want to prescribe it. Could be doubled though if they're willing? Mine is doubled.
Good luck with hearing back from cons/GP - really hope they can come up with something for you to help before you have to go back to work. All my GP can do is give me pred (there's no wiggle room in anything else) so I tend to avoid this until I absolutely have to (also because if I go when still okish I feel like I'm being overdramatic). Then I end up with more pred for longer - clever. Now he knows pred works for me I think GP is coming round to the 'hit it earlier' idea so maybe he would be ok if I came earlier, but I'm still reluctant.
Have to see nurse anyway for a blood test so made that appt with asthma nurse - she never knows what to do with me but maybe she can advise/prescribe pred if necessary -no GP appts this week.
Hey, thanks for updating, glad you saw your regular GP and that he was of some help, even if its just to contact your cons. You're clearly having a flare up at the min cos of the pollen etc, don't know if it will help, but could you contact the reception at your GP practice and ask them about the pred? They will then probably talk to your GP, who could issue a prescription? I know that I was able to do this until recently, where now its different because I am on permanent pred.
I dunno if it helps, but I sometimes follow the same sort of pattern as you do, going downhill slowly (as I am doing at the min) usually happens when I am on pred - seems to keep it *slightly* more stable, but I know that for me at least it will at some point crash and need hospital, but then annoyingly at other times I go from being fine and then just crash and need to get help quickly!! My asthma is very up and down on a daily basis though, some days PF varying by 60% (sometimes upto 70% when I have a sudden attack). So frustrating, so can sympathise with the feeling of really annoying asthma symptoms!!
I saw my GP today too, and the only thing he can do is up my pred (which he says I need to do really), but really reluctant to up it, so he's said to keep it where it is for the time being and avoid pollen and all my other triggers! Can't change anything else without contacting cons.
Like Philomela, I am surprised they are happy with you using so much Bricanyl, I would have thought that is a flare up and they would automatically given you pred to try and get it under control. Is there any chance of doubling the montelukast for the time being to help with the allergic component? Perhaps that is something your cons will say for your GP to do.
LOL at GP not knowing what to do and being ""difficult/unusual"", I only find it funny in that I am not the only one who's GP is at a loss at what to do, its a bit of a relief! I can just imagine when I ring my surgery my name coming up red and flashing ""danger, avoid seeing!"" lol.
Hope you hear from GP soon and that you manage at work tomorrow! Are your work supportive when you're struggling?
Laura x
Philomela - It took me a long time to realise that although I hate pred (I often have to take tablets to stop me being sick before taking them and then take one every ten minutes or so) it is much better to get in early rather than suffer for months. In the past, my GP has always been very supportive of this and my cons has said that I probably often leave it too late to start a course. Last year, I was even given them just in case because I had walked to the appointment for something else and so had really bad hayfever by the time I got there. The doctor said ""you know what's going to happen don't you?"". I hope you get sorted soon.
Laura - I admire the fact that at least he openly admits he is out of his comfort zone but still wants to try and sort it out. I was one of his first patients to go onto SMART several years ago and I did start to feel like a bit of a guinea pig. I also had to smile when the nurse I saw a few weeks ago asked if she could discuss me with the specialist asthma nurse (there are three asthma nurses at my practice but one is technically the specialist) for her own professional development! I think I might mention the pred when the GP phones me back or maybe look into adding Flixotide (as still not on as high ICS as I was on with Symbicort and Pulimicort combo) or increasing Montelukast. If I get any worse or am still struggling later on today (reliever only lasting a few hours and I have a persistent phlegmy cough with some SOB) I will give them a ring but like you, I feel that the my name flashes when I contact them and don't want to look like I am overreacting. My peak flow is very up and down at the moment (ranging from 170 - 420 in the last week). Usually during a flare, the graph is a zigzag (low in the morning, higher in the evening) but because I have been doing different things over half term it looks very messy this week! My school are very good when I am bad and so I do usually go in (plus we are expecting the dreading phone call). They have learnt not to make the ""you look dreadful"" comment first thing in the morning because by the start of school I am usually ok (as long as I haven't been outside). I also have a range of measures put in place, for example I reduce my need to go outside by doing an indoor playtime duty (a bit like detention) and as I am a music specialist, someone is usually willing to do my PE if I do their music (will be suggesting that this week). It's only if they all decide to use the outdoor area that I have to go (will try not to make it too exciting this week so they choose the inside areas instead). I think that is where having a severe allergic asthma diagnosis (they also did have call 999 in my second month of working there - although technically it was an allergic reaction not asthma). Did I read that they are doing a ""risk assessment"" on you? This made me laugh when I had one - I am officially a risk to them but it was very useful!
Hey, Its good that your school are supportive, also *hope* you don't get the dreaded phone call when you don't feel 100%!! They decided to see me trice last year when they came
What do you play? I am pretty musical too - piano, woodwind, sing - but frustratingly can only play the piano at the minute lol!!
My school are obsessed with risk assessments, its as though they think that I will keel over on them or something!! I will just reassure them that I WILL tell them when I am struggling, though its pretty obvious anyway!!
I think when you get comments like that from GP it is reassuring, because you know then that they are not just going to give you something for the sake of it, I think if mine didn't take this line I'd be worried that he was just prescribing to shut me up lol.
You feeling ok now?
hehe Kayla, your GP sounds a lot like mine (and yours too Laura) - maybe they should all get together and have a nice moan about difficult asthmatic types who don't fit what they know? Same here, the receptionists are great though as they must know me but never openly show that they are recognising me and probably thinking 'not her again' (They also have never queried it or been difficult when I've asked for an urgent appt and have even fitted me in with the dr I request where possible for these appts - cheeky request I know, but I figure it's more efficient for everyone if I can see him and they can always say he's not available).
I definitely appreciate the fact that mine is willing to admit when he doesn't know the answer; he has referred me in this case and I've never had to ask (actually almost asked not to be as I'd not had a brilliant experience and he said he could appreciate that but he was out of his depth - then I discovered I didn't have to go back to that cons).
Another musician type here though not a teacher - singing, oboe (well used to, lungs plus reeds make it hard atm) and cello (grr shoulder injury making it impossible - I am so decrepit!)
I also play woodwind (mainly flute but also clarinet, sax and a bit of oboe), piano and sing. I managed to sing (and cough) my way through a concert a few weeks ago but I don't push my self at choir (I sing alto although am technically mezzo sop as I have had lots of surgery on my jaw and get quite a bad thought with pnd etc. I can usually get by with the flute when asthma is bad but not the rest especially oboe.
Haven't heard back from my GP so still none of the wiser. I was writing reports this afternoon and didn't realise the time until I needed my reliever so looked at the clock to record it and realised it was 7. Therefore wasn't able to phone for pred. Pf is still down but does pick up after Bricanyl so don't think I will need any help tonight. Think I may be in for a rough one though. I don't think my body was very happy with the 6+ hours spent outside yesterday (mainly in a field) for a wedding!
Laura - I hope we don't get the call too. I left a school which had just been inspected last year to move to one that was due it! We had an authority visit in Jan when I missed the visit week of term as had two bad attacks in one week (practically unknown for me) and was still recovering when they can (very little sleep, not really being very patient with them etc). I had my worst lesson observation ever and the advisor wasn't really interested in my reasons why. I also would hate to be off or for anyone to think I was using asthma as an excuse (I am still the new one with a lot to prove). As for risk assessments, one friend at my previous school had to have one because she was pregnant-I think it is the world gone bad! However saying that it does make a huge difference to me. I hope my little ones will be nice to me tomorrow-don't think I'll have much patience with them!
Hope you are feeling a bit better too.
Hiya, I play clarinet and sax and am a top soprano - none of these can my lungs cope with at the min, I go to use 1.5 clarinet reed - pathetic, blow 1 squeaky note and have a hugeee coughing fit, so sax is out of the question and don't have enough breath control to sing!! Also top soprano is out anyway cos of the ICS I am taking (averaging at 3200 mcg at the min) wreaks havoc with my vocal cords!!
I am planning on going into work tomorrow though, I jut don't feel as though I can justify more asthma absences
I am sure that if you get the call and are ill then they will understand, even if you have to pay to get a GP note. Though my GP always offers to sign me off - HATE being signed off though, so unless have gone to hope I refuse lol!! They are usually behind at this time of the year though, so hopefully will be and they don't come til next term
RE little patience with the little ones, I tend to find that if I say ""I feel poorly today, so lets do such and such "" then they are generally really good - even if its the normal lesson lol, bless em!
Just give surgery a ring at some point tomorrow and mention pred, gives you an excuse to ask if GP has got in touch with cons
Hope you don't have too rough a night tonight - my lungs are sulking yet again - don't want a ""do I, don't I call for help"" night, hence being on here even though ridiculously tired
Have a good day tomorrow! Laura x
I am regularly telling mine that I am feeling poorly and it is obvious because I get a really bad throat (combination of inhaler - I think it is the powder ones but could also be ICS, pnd and irritation from coughing so much). Last year they would have been extra nice and even sometimes made little cards and flowers but this year's class still mess about and probably take advantage (they also don't respond very much to the ""I'm really disappointed speech. Not sure how long I will last tomorrow though tbh - feeling very tired and struggling even though I am just sitting doing very little and have been all day (even wheezing a little now). Will give GP a ring in the morning-especially if I still have a wheeze so he can actually hear it! Hope your lungs let you get some rest too.
Take care
The pollen has a lot to answer for this year my class know I am asthmatic because the head kindly said during an obs ""have you taken your inhaler?"" Lol. So are generally sympathetic when I start!!
My gp wanted to sign me off again, pf stubbornly at 55% again this eve - bad enough to let me get no sleep, not bad enough for ""help"", finding I'm waiting for my ""crash and burn"" sometime soon
Don't push yourself tomorrow kayla, let them know how you're feeling, and get the pred!! Are you not a great wheezer either?
Laura x
Seem to keep swapping between threads! My lungs aren't too happy with me this evening - tight and also slightly wheezy although I'm usually a non-wheezer. Getting really breathless every time I move again. This is the bit people at work don't get because I can spend all day seeming fine apart from a cough, but be struggling all evening and up half the night.
Hope you manage to get some sleep soon, although neither of you sound as if you should be going in tomorrow to me.
I think a lot of us (me certainly me anyway) are very good at ignoring our symptoms and also covering them up, so generally people don't see how dodgy you are!! With me though it gets to a point where you can tell I'm struggling!!
Strange how many of us don't wheeze!! I have a window where you can hear it sometimes, but then that's rare! I tend to hear it more at times than medical people when it can have passed or become dodgy.
I will go into work tomorrow, but will most likely be sent home when they look at me, but I don't want to not make the effort!
You don't sound too great yourself spookymilo, perhaps we should all have a sofa surfing day? Lol. At least on this site you can talk coherently when you can't string a verbal sentence together lol!!
Laura x
Hi how are you today? Did you get to work?
Haven't been too bad today but absolutely shattered. Just want to sleep.
Glad to see you got through it Spookymilo. I also went in but only had to teach the morning as did some advisory work this afternoon (don't think I would have managed the day though as turned up at the school quite SOB). I really don't recommend teaching on less than three hours sleep though!
Laura - I do wheeze but not a great amount and it is usually very easily sorted with Bricanyl. The reason I prefer one particularly GP is that he recognises the difference between my asthmatic cough and normal cough/recognises this as a valid symptom.
The good news is that my cons has asked to see me tomorrow (she doesn't have a clinc but said she would fit my in before work). I am now thinking of all the things I need to bring up as I am very tired and likely to forget-I keep forgetting to ask GP if there is anything I can do to relieve the itchiness in my throat (other than drink coke which I hate and is probably not doing my teeth any good). So far I have thought of:
Should I be trying pred again? (I still think this could have been treated quickly if I had it quick enough/at my usual dose instead of 30) Then what about having some at home to start straight away?
What should be on my action plan? (In the context of I am told to see asthma nurse quickly so did and then got slapped wrists for not needing help) I will get one!
How much Bricanyl should I actually be taking? (obviously none is idea but unrealistic at the moment but about 16 puffs a day for a month to me is not good).
I think they will probably want to try different meds again so then any questions about that (including what to do if nothing improves/gets worse which I didn't think to ask last time!)
Will read back some posts before then to see if I have missed anything out.
Hey, well done both of you good you're seeing cons tomorrow!!
I got to work today and was told ""you look dreadful, you sound dreadful (no voice!)"" we've got supply in to cover, you can be an extra pair of hands in the SEN dept, should you be in etc etc lol.
They were doing a sats type test so was kinda invigilating, and just nose dived - admittedly pf struggled to get 50% this morning :-/, started changing colour and really exhausted, ambo almost called and all that jazz - managed to sort it before that was necessary, only through salb/spacer, couldn't breathe in fast enough for symbicort. Needless to say I got sent home!! Lol
Went to gp just now, got shakes etc from sooo much meds today, but my of had the cheek to be 100% pb - this means a variation of 70% today. Gp said that he had no idea what to do with me, I'm his most ""difficult"" patient, most are nicely controlled. He can't double up montelukast cos its oh primary care and said I know more about asthma than him, he's out of his depth and doesn't have a clue! He's prescribed fexofenadine and wanted to up to pred, but I stropped!
He's told me if I get to 50% again I need 999 :-(, but what if I respond to salb etc?
Sorry for ranting, I could actually cry, had enough of keeping flaring up
Laura x
Sorry to hear you are struggling again Laura. I'm sure that if the school had called 999, they wouldn't have been dismissive given your current flare/history/diagnosis (although I understand it is not nice for you). I thought my pf can vary after reliever but that is huge.
Is the Fexofendaine new? I find that is the best antihistamine for me (citirizine and lorratine) don't touch my hayfever at all! I'm actually quite looking forward to seeing cons again to see if they will change hayfever or asthma meds (or just give me pred-if someone told me when I was on maintance pred that I would be practically begging for It now, I would have just laughed at them). Although I'm not sure about the sound of theophylline which the GP has thrown about as a possibility but he wasn't able to start without advice. My GP also wouldn't double Monteleukast and said he had never heard of it (I wanted to get my phone out to shown him this discussion).
I really feel for you and hope you are able to get some better control soon. It may be hard but try not to push yourself too hard.
Take care
Hey, I'll post more coherently now I have calmed down from my total asthma related frustrated meltdown lol. I also didn't get to see my regular GP today, but cant really complain, because I was seen within 2 hours of booking, the GP I saw was a very young one too, but lovely too
Yeah the Fexofenadine is new - I have been on citerizine, doubling when pollen high, but it doesn't touch me. Apparently I have had an asthma related allergic reaction to it in the past, which is why they didn't prescribe it before, but he wants to try me on it *fingers crossed* it doesn't cause any problems lol.
Sorry to hear you are struggling again Laura. I'm sure that if the school had called 999, they wouldn't have been dismissive given your current flare/history/diagnosis (although I understand it is not nice for you). I thought my pf can vary after reliever but that is huge.
All I seem to do is struggle at the min - though I did have a very good and settled day last weds and thurs - saw cons on thurs when I was good. Then it warmed up and up went the pollen count and off went the asthma!! I practically begged our poor first aider not to ring 999, promising I could sort it myself, which fortunately I did! Mt PF varies hugely, but I think this comes with the brittle diagnosis. Though I am not convinced that if I had used my own PF meter it would have been as high!
Annoying thing is though, I was ""good"" when at the GP and has ""no wheeze"" (AAARGH), I am going downhill again, as I told him I would. Still better than I was earlier, so hoping I can stay where I am and not get any worse/need help! I am ""off timetable"" tomorrow sorting out next years KS2 long term planning lol - you'll smile cos current risk assessment says I cant be in class cos of the *risk* of an asthma attack
I spoke through with the GP I saw tonight the meds my cons has put me on and he wanted to change it and put on repeat prescription just enough of the symbicort to last me a week at the min (would last 14 days otherwise as my preventer) for the month. He also couldn't understand why cons wants me to be on maintenance pred of 20mg ... well, still having attacks at 35mg, so that's besides the point lol. While I hate the stuff and refused to go back up, I clearly need it at the min. I think I am going to be asking my normal GP if he can phone me tomorrow ... not overly comfortable with todays appointment! Feels a bit odd!
No additional treatments have been suggested, is there any way I could mention them to GP? As I say, montelukast couldn't be doubled. I have a totally unrelated question to ask my cons pa, so think I will phone tomorrow and mention all these difficulties. Will I EVER get any control?! According to the GP I saw tonight, brittle asthma is *easy* to control, hahahha!!!
Sorry for ranting, I am just SO frustrated and at my limit now - no sleep for the last 2 nights cos of asthma and then todays attack and GP apt.
I'm actually quite looking forward to seeing cons again to see if they will change hayfever or asthma meds (or just give me pred-if someone told me when I was on maintance pred that I would be practically begging for It now, I would have just laughed at them)
I'm glad that you're looking forwards to seeing your cons, before my first apt I was nervous, but also excited (I know its not your first one though - just empathising). Hopefully he will think about changing your meds to hopefully make them more effective! I wouldn't be surprised though if he gives you pred too. Don't forge to ask for your own *back up* supply either lol. Pred has its place. Though not a nice drug and I HATE having to be on it, it does its job and calms things down!
Thanks for listening to ramblings and hope tomorrow goes well!
Laura x
Sorry you're both still suffering. I'm not too bad except from the cough but sooooo tired just can't face doing work at the moment. Have wayyy too much to do and just can't get my head round it.
Laura prescribes a nice early night for spookymilo and not to worry about crazy amounts of work!! xxx
Oh no, all struggling! Hope you all get some sleep and sort things out with your respective cons/GPs (Kayla, great that yours can fit you in)! V frustrating when you see one who thinks they know best - I have had a GP know better than a resp cons to be fair but the resp cons in question was doing nothing and he wanted to do something to help as he could see I was struggling - it wasn't a case of messing with a plan!
I don't know why they're so against doubling montelukast as it is defo possible in primary care at least sometimes! Perhaps you could ask cons about it if ringing anyway?
Seeing asthma nurse tomorrow. My lungs are playing mind games - up and down, no idea what they're doing! I hope she has some ideas and isn't just massively puzzled by me. Also that we don't have the 'hmm not pred' convo - based on past experience by the time *I* think I need pred I do need it and faffing around is not helpful.
Hope you all manage to sleep tonight.
Well I take back everything I said yesterday about not really having attacks and still being able to sing - just (rather stupidly after not feeling great today) went to a rehearsal. Started coughing in the warm ups so went outside to have a drink and a puff or two of reliever (I don't like taking my inhaler in front of people), had just got back to my seat and started cough again. Managed to stop it when I suddenly felt very weak and had to sit down, once theremI realised that I really couldn't breathe. Luckily I was sat next to a nurse who told me to get my inhaler, not are you ok Kay? Or do you need your inhaler but get it! Was really SOB by this point but she managed to get me out of the hall (and full view of everybody), calmed me down and managed to get me home. She did suggest OOH (she is an urgent care nurse at their centre) but I said I would call them if I get worse again. The worst part is that the one part of a plan I have is to swap from Bricanyl to Ventolin through a spacer when really can't breathe (I have a low tolerance of Ventolin but the Bricanyl is hard to take if you can't breathe in hard enough.) and that was at home! Feeling a bit better now though.
Philomela - I hope your app. tomorrow goes well too and you don't need the pred argument (one I know well). I was really lucky that my cons said she would fit me in first thing even though she doesn't have a clinc.
Spookymillo - I am hoping that if I turn my computer off, the lesson plans, children's reports and report from today will all write themselves. Maybe the magic marking fairies will mark my literacy books too (one child presented me with her five page story today!) all this will happen while I am fast asleep and not coughing at all! I hope the same happens for you.
Laura - I hope you can see you usual GP tomorrow. If it helps, I have I get better responses from cons if GP phones them (for asthma and Max Fax). When I phoned the other week (I had a late app with nurse and she told me to phone on the morning) it took them a few days to get back to me and then they talked over the phone but when my GP phoned them yesterday, they got back to me almost straight away (apparently tried phoning last night but couldn't get through) with an urgent app. It could be lots of reasons why - further on in flare, days etc but it also happened at a different department in a different hospital a few years back. Just a thought as your GP will probably want your cons to suggest changes if he feels out of his depth. Oh and I have been put on 'light duties' if I go back tomorrow too - analysis inch my KS1 papers! Have even been told to do it from home if I want!
I hope everyone gets a bit more sleep tonight. Hopefully I will be able to make a bit more sense in the morning!
not good! I really hope your cons sorts you out tomorrow. Shame about rehersal
I cant talk without being sob
I have phoned in sick for tomorrow - will be surprised if I manage to avoid the green men tonight
Going to go to bed, pretend my lungs are working and try to sleep. LOL
Good luck Kayla and Philomela - I hope the pred debate goes in your favours ... if not PLEASE take some of mine lol
Laura x
Heya kayla,
Just wanted to say I hope you get some answers this morning! How are you feeling today?
I slept upright on the recliner last night and actually only woke once and had a bit if a strop! Quite impressed
Hope pholomelas appointment goes well too
Laura x
KaylaCP: I *really* hate it when ""just singing"" triggers a flare. I feel for you. I'm also a singer. Asthma has made it all but impossible to sing reliably and normally I have really good control (lots and lots of hard work learning to ""play"" a four octave instrument with a really strong bottom and top that fight each other) Once peak flow gets below 90%PB i start getting a nasty wobble in the middle register. I lose resonance as well. Can't really practice for more than 15minutes even if I'm only doing ""chicken soup"" warm-up exercises. Arggg! If I could get rid of the way asthma has affected my singing I really think I could live with the rest. I'd just sing whenever asthma got me down and then I'd be happy.
Philomena and others: count my GP in with the doctors who don't know quite what to do and are willing to admit it.
Laura: sorry to hear you are still struggling. I'm also feeling like I'm on the countdown to another hospital visit. I have managed to get a full night's sleep the past two nights(yeah!) but i'm still up and down and mostly down despite going up to 30mg pred. this am 250 --> neb --> 420 --> 300 (63% PB) less than two hours later. Trying to decide whether I should call the GP to update him. I'm not really in any sort of distress, just tired, tightA, and uncomfortable. He would want to know if things are worse. Right now they aren't worse just not better and you would think they would be better if I'm on more pred. Another grrr. Asthma is sooo confusing.
Thank you Laura.
I am glad you had a better night. I was up for half of it so have just said I won't be in today. I think part of it was that I had to take the Ventolin yesterday which I have a low tolerance to so was very shaky and tachy.
I am just getting ready to slowly walk up to the hospital (it is only a five min walk) armed with my list of questions,peak flow chart and symptoms records on my phone! Trying not to be too optimistic like I was at the GPs on Monday though!
Take care today.
Hey kayla, hope it goes well - don't rush it!! Lucky your local is so close - I'm 20 miles away! Not good with the ventolin - I get quite shakey and tachy too, when I've had a lot of it, but not as bad as you!!
Beth - I agree asthma is super confusing! I'd probably contact your gp even if just to update him, sure he would want to know about neb not being that effective. I don't have an at home one, but wouldn't trust myself with one either, I know I'd get into a habit of using it when I need to be doing something else. I also can imagine how frustrating not being able to sing is, I am not going to pretend to do it for anything else than a hobby any more, but I find that I can't hold a note when bad - do you find ICS effect your voice too? Weirdly, my voice also goes very hoarse after an attack ... hmm. Very confusing!
I really hope you can avoid another admission, it's so frustrating and I am sure ""waiting"" for it doesn't help either!! What's triggering at the min? Still the pollen?
I'm not as bad this morning, perhaps it's a combo of sleeping and pollen not being aa high? or new antihistamine? But now doubting whether I should go see normal gp or not?
Take care! X
Kayla - good luck! Hope you get your questions answered.
Laura - glad you managed to get some sleep and avoid the little green men!
Beth - hope the situation resolves itself somehow. I completely agree that this is one of the more annoying parts, not knowing what to do - takes energy that would be better spent elsewhere IMO!
Thanks for good wishes for my appt - tbh not sure much is going to come of it so trying to keep my expectations low. She's nice but I bet she'll do a PF and decide it's fine...
Well quick update!
As usual cons was lovely, listened, was sympathetic and was thinking of different things to try (which are totally different to what was suggested last time). Also said I may benefit from seeing the physio to see if I can improve my breath control when struggling. However, the only change she made was to change my Seretide Accuhaler 500 to Seretide MDI 250 with a spacer. It is not that I am questioning her but I can't help but think that might be too little too late. I asked when I should expect to see an improvement - answer ""it may take up to two weeks"". (She is writing to the my GP with other things to try next - looking at reflux again, then add atrovent as a possibility). My reply - ""Well what can I do in the meantime? I am physically exhausted from lack of sleep, am regularly relying on Bricanyl for short term relief and while I can work, I am finding it very difficult"". Answer - ""I can't do much more or I will just be throwing medicine at you"". I think I started to come across as being pessimistic about it again (she did ask why I thought it was not going to work) so backed down. I was asked if I wanted to see one of their asthma nurses to check I was using my inhaler correctly but I get that anyway (now thinking I should have said yes and discussed action plans too). While I appreciate it is best to only change one thing to find out what really works, I do think I need some relief. Despite walking to the hospital, inhalers were still working so spiro was fairly normal which didn't help!
Despite all this, I took a few steps out of the hospital and started coughing (it is quite cold today too), took a few puffs to get me home and pf was just above 50%. Can feel my chest getting tight again so phoned up the GP to see if I can see them when having symptoms (although closely monitoring pf incase in drops any more). Just spoken to AUK nurse too (who are always great when you are an emotional wreck) who says that she thinks I need pred to get over it too (didn't even bring this up although hinted at it).
Sorry for going on. Feeling a little emotional that I am still no further on and cross with myself for not sticking to my list. I do appreciate that she squeezed me in at such short notice though.
Hope everyone else is feeling better today.
Hiya Kayla, I am glad that your consultant appointment was mostly ok - might be able to help a little, maybe, possibly lol.
When I first went onto seretide (I am no longer on it) I was given an accuhaler and wasn't on it for very long as after being put onto it, I had a flare and had to see my now choice GP - he changed it to an MDI (back in the days when I was on 2x125 lol) saying that using it through a spacer means much more effective delivery of the medicine to your lungs. He said that the accuhaler often just deposits a lot of the medicine to the back of your throat. So perhaps that is what the consultant is thinking. I don't understand it taking upto 2 weeks to start working though? Because its the same medicine, but then there must be a reason - I am not medically trained lol.
I think you're right about needing the pred to get over this flare - its not nice stuff but it does its job. This morning I rang my consultants secretary and had a bit of a meltdown over the phone because of the events of the previous few days, she is going to ask the cons and get back to me. I was just thinking whether you could contact them and ask them about the pred? Other than that could you book an emergency appointment with your usual GP and say about peak flow being so low, go armed with all the info you took this morning? When in the past I have been bad (before all this whats happening now started) I have spoken to the AUK nurses who have recommended starting pred at 60% PB, so at 50% your GP should prescribe it, just explain how sleep is being affected and that the asthma is impacting on quality of life etc. If you do contact your cons secretary, do you think you could ask for an appointment to see the asthma nurse at the hospital? I am awaiting an appointment on the recommendation of my cons with his to come up with a proper management plan - just a thought If all else fails with getting the pred, go to OOH/A&E - they might even give you a neb, which would help to being up PF for a bit and they should prescribe. Gosh you wouldn't think it would be such an ordeal to get a medicine which everyone hates!!
It is good to know that they are also considering other treatment options for you too.
I went to the GP yet again this morning, didn't get to see my normal GP, but saw one who I have only seen once in the past, but she was actually amazing. She went right back to asthma basics, but didn't patronise and seemed to clarify everything that is happening at the moment. She spoke about the pred long term, because that's a big concern at the min and she said that there is no way am I at the end of treatment options. Xolair was mentioned as well as some of the more serious immunosuppressant type of options. Perhaps this is something that they are considering for you, as you seem to have a big allergy component to your asthma? Again not medically trained, and not sure how happy I would be with the immuno type drugs, it was just nice to hear that there are further options that are available.
Feel much better today and GP did a lot to reassure that the way I am managing my asthma is as good as it can be with the way it is behaving (or not!) at the min. I spoke about my lows PFs and why I don't call for help, and she was reassuring about this after she established just how far I would be willing to push it!
Philomela, I really hope you get some answers and reassurance today! Not good when you're struggling when is the PhD interview?
Sorry if I am rambling - still sleep deprived LOL.
Laura x
Kayla - sorry to hear it wasn't as useful as you'd hoped! I always plan questions then don't ask them as well, argh. I'd basically agree with all Laura's points, sounds like you do need pred! Hope the change in device helps you though.
Laura - glad you had a useful appt and have other options - always good to know.
I had my asthma nurse appt. Not hugely helpful though she did give me a spacer (told me the whole '10 puffs is like a neb' line - yeah right, having had both now!) Also suggested I keep taking the antihistamine and nasal spray even if seeming ok to make sure hayfever is controlled - am really confused by all that. PF was 440/450ish which actually isn't great for me - had to point out my personal best as she was looking at the screen which said my predicted best is 451! (I'm sure it's been 470 elsewhere). She did say it sounds like I need to really chase the cons appt and get it as soon as I can but nothing much from this appt. tbh I am still not sure if I need pred or not - it wasn't too bad yesterday but seems worse today with mucusy chest again (sorry TMI) and taking more reliever - had the dentist for a filling after the nurse (isn't my life fun? :p) and don't think the cold air being blown round my mouth was necessarily helpful!
So chasing cons appt now - letter was sent 20th May but seems to have been lost in transit so they've faxed it over now. Hopefully not too long.
PhD interview is on Friday. I really want it so am paranoid about balancing swotting up with sleep...
Sorry about earlier moan - I blame lack of sleep and too much reliever!
Laura - you're spot on about the reasons for changing to an MDI. I regularly have a sore/irritated throat which is usually put down allergy or to irritation caused by coughing but she said it might be the dry powder too. Xolair was looked at in the past but I am too allergic. Not sure about others - I have so many different types of allergies (hives, asthma, anaphylaxis) that I never know how to see that aspect.
Still waiting to hear back from GP (which is unusual as the duty doctor is a morning thing but sometimes they pass it on to the most relevant person) but I don't think it would be much help now as stabilised myself with reliever. I might give the cons sec a ring later and ask about the asthma nurse as I probably need a refresher for MDIs anyway. Philomela - I hate the pred or not debate. I hope you manage to achieve the balance of sleep for Friday.
Take care
The pred or not debate is frustrating, that fine line of knowing its probably what you need, but then the side effects and the issues it presents. My GP was shocked at the idea of a 20mg maintenance dose, but agreed with the cons that we need to get there in the first place lol and then cross that bridge after next cons apt.
We all need to complain sometimes, especially when its been a struggle for a while.
Kayla - gosh, so many allergies - how do you manage? I am lucky really, have hayfever, eczema and then all the normal asthma related ones, but not much else thankfully.
Contacting cons sec sounds a good idea, as does keeping pushing for an action plan.
Hope you're feeling better now! Laura x
I never thought I would walk out of the pharmacy happy that I have pred! My GP was a bit reluctant to keep prescribing it as a short term fix and we talked about hideous amounts of Bricanyl vs pred but agreed they are probably needed in order to give the Seretide the best possible chance. When I picked up the prescription, I bumbled into a friendly GP (saw her a lot while I was at uni but she tends to work at the campus) who said she tried to phone me back but had the wrong number. She asked me whether we had got any further with cons and I just broke down. Then had a lovely reassuring chat with her - told her about the asthma nurse and she booked me in with the usual asthma nurse to check inhaler technique but she also said it would be good to see me at the end of the next week when tapering the pred anyway - I feel an asthma plan discussion coming on!
Laura - to be honest I can live with most allergies. I have lots of drug allergies which are fairly easy to avoid, nuts can be tricky but I have grown up with it and am very good at checking food. Hayfever is probably the hardest at the moment as it is so unpredictable. Hope you are feeling a bit better - going back to work tomorrow so having to get on with my marking etc. (those fairies didn't come last night!)
Hiya - it is bizarre to be happy about being prescribed pred, but that because you know its necessary its horrible, but unfortunately does the lungs good when needed!! This is the line I am taking, because I have had to accept the fact that its not negotiable - though point blank refuse to go back up!!
It also seems good that given your history they are tapering you even though its *just* a short term fix. Hopefully this will mean that when you finally come off it then you don't end up straight back on!!
Glad you had a good chat with the GP afterwards, she sounds lovely and probably exactly what you needed! The asthma review appointment sounds positive, hopefully you are able to get some sort of plan together, even if its just to tide you over until your next apt, where you can demand a plan ;-p hehe
I am hoping the marking fairies go into my classroom tonight and not only mark their cover work, but tidy it up too!!! lol.
Are you feeling better this eve? Hoping that I can cope with work tomorrow - will feel stupid if I get sent home again
Laura x
Hi Laura,
That is one way to confuse me! Yes she is lovely (when I had a few problems as a student I'd always ask for her as she is so understanding. Unfortunately this means she is very difficult to get an appointment with. My usual GP is good for the fact that he likes to try new things and is into the understanding symptoms side of it (he loved the patterns I noticed with hayfever last week). I think it was unfortunate that I haven't been able to see them when I really needed a bit of moral support. They do usually taper (quickly) any second course I have due to the fact I have been previously have had maintenance pred. I am hoping the nurse review will be ok-she has been a bit hit and miss but I am seeing her on advice of the doctors and not totally about symtpms so should be ok.
Am back to where I was on Monday I think - still coughing but controlling it. Tidy fairies sound good as I will almost certainly be going back to a bomb site! Are you feeling a bit better to be going back then? Will you be teaching? I had the whole are you sure you are ok to be back? Think about past experiences speech earlier!
Off to bed while I'm feeling tired and not coughing to much!
Take care
Hopefully pred taper will be quick and effective!! It's good that the gp is good and reassuring!! Hopefully nurse apt will be a positive one, it should be when the doctor has clearly communicated!!
Glad you are picking up, amazing how quickly he stuff improves things!! I have gone downhill a bit this eve, at 60% again and struggling to settle, hence being on here lol. Hoping to get some sleep though. Looking forwards to going back to work tomorrow, I've requested that I teach my own class, sure I will manage better doing my proper job!! If I struggle they will know what's going off!! Are you doing normal stuff tomorrow?
Hope you get a good night sleep!!
Laura x
Hiya kayla, just wondered how you got on today and whether the pred is helping? Did you teach your normal class today?
I got through today with only a couple of blips, but meds did their job I am hoping that this might mean a *stable* few days cos meant to be having a had out with a load of school friends on sun - so will take it easy til then and hope stability remains for sun
Take care, Laura x
Yes I managed to get in and teach a normalish day (just swapped my PE session as there is no way I can be outside for an hour at the moment). Kids were great too as I am starting to get a 'too much inhaler' croak and still coughing a lot. Think pred must be kicking in as manged a few hours solid sleep last night too. I think I actually prefer the seretide through an MDI although it doesn't taste great but realised that I do need to check technique with asthma nurse (not sure whether I should be doing one big puff or tidal breathing-doing a bit of both at the moment).
How have you got on today? Did you go in?
Glad you got on ok today
When I was on seretide I would spray a puff into my spacer and then breathe in through my mouth as slowly and deeply as possible until I was at my limit, take the spacer out of my mouth and then hold my breath for 10 secs before breathing out slowly through my nose. Would then repeat for the second puff. Is that any help?
I got my inhaler technique checked with changing onto the epic doses of symbicort I not take cos it's a turbohaler.
Make sure you drink plenty and brush teeth etc after seretide (sure you do!) which helps avoid hoarseness etc, that could be partly the cause of that? But I also go hoarse after a lot of reliever, you can always tell before/during/ after an attack with me because I always lose my voice. I am permanently hoarse at the moment lol!!
Work sound as though they were good today glad you didn't have to so pe!! I was silly and taught pe and had to do a fair bit of salb/atrovent through spacer then symbicort, then same thing later whilst on break duty. On the plus side though, while I went down quickly, I also came back up quickly and am averaging at between 70-90% pb today
Work are going to ensure I don't have to go outside tomorrow, so that's good enjoying a day of relative stability!! Hoping to keep at this level so I don't have to debate whether or not to taper pred on mon!! Desperate to get to 20 ASAP!!
Very much looking forwards to the weekend and sleeping on Saturday - trying to plan tomorrow now as haven't been upto it before today!!
Glad pred is kicking in Laura x
I'm glad you've managed to get through the day and that work are helping you to stay in doors (that is one of the biggest things my work do to help).
Thanks for Seretide advice too. I realised last night that I should have asked the cons yesterday as I haven't taken an MDI preventer for years and only use Ventolin when really bad so can't do big puffs then! I always rinse my mouth after inhalers (had this drilled into my routine from the age of four) but think it is my reliever that does it (where I have to take a turbohaler). I don't think I ever had my symbicort technique checked (they just said it's not hard) and it was only at the hospital during an attack where they realised I couldn't breath hard enough to get in). Interesting that you take atriovent as my cons said this is an option but the GP I chatted to yesterday didn't seem sure (that was third on the list of things my GP could try so hopefully it won't get that far).
Hope tomorrow goes well too and you manage to stabilise for the weekend. I'm meant to be playing in a concert on Sunday but it is outside in a garden so not sure whether I want to risk that just yet.
Take care
Laura - hope you get through tomorrow!
Kayla - ditto, glad you had a good day! And xd fingers for the concert, hope you manage that.
Just wanted to say re Atrovent - I'm on it and it's pretty good! Just like another inhaler (in fact I used it as a reliever for a while). So depending on what the other things are - and hope also you find something before then - could be worth giving it a shot? It tastes foul but though it's slower to work than Ventolin I do find it more effective esp for sleeping.
I'm officially in purgatory - have to just 'keep taking salbutamol' till I see the cons (asthma nurse encouraged me to sort that out asap and I seem to have got a bit further at least). Can't work out what else to do!
Thank you Philomela.
Sorry to hear your struggling. I must admit I'm finding the just take reliever advice is getting a bit tiring but at least I am somewhere with experimenting with different meds. I hope you get the appointment quickly. Is it your interview tomorrow?
With atrovent (Iwish this would stop auto correcting) my cons thought it might be good to relieve the symptoms. The next step (after changing Seretide delivery) is to try something for reflux (they don't think I have it but as a female uncontrolled asthmatic they said it is worth a go), the atrovent. Still not ruled out theophylline too but that would be when I go back to the cons (think Symbicort SMART has been left on the back burner now). I feel I am starting to know more than a pharmist (who today told me she did a course about asthma and thought of me - we are now on very friendly terms).
Probably was too much info with the seretide, but couldn't condense what I used to do with it lol!!
It sounds as though both of our schools are conscious of avoiding asthma attacks - my head told me I frightened her on Tuesday because I was so blue and out of it ... oops ok now though
I think I am on everything physically possible to be on at the min!! (Maintenance symbicort 1600/48 but upto 3200/96, pred 35mg, salb (as much as I need - though 20 puffs in 40 mins = 999) atrovent prn - 4x2 puffs, montelukast 10mg, fexofenadine 180mg, omeprazole 20mg and nasonex ... soo much medication!!!) I think that this is why I have atrovent too, it's purely because it gives me something which works on different receptors to try and encourage my lungs to behave when being naughty. Atrovent and salbutamol are normally used together in a hosp neb. It was initially given by local hosp ""to keep to out til you see gp"" and go has decided to put it on repeats! Like philomela says though it tastes disguising. But during an attack I stick it through my spacer with the salb and hope for the best lol!!
At least it's further down the options list for you, hopefully you don't get there
Hope you manage the concert I am going to Alton towers with school friends - crazy excited, just don't want to ""kick off!"" will I be allowed on all the rides? Will ensure I take my pharmacy
Philomela - what a pain!! Can you not see normal gp? How are you feeling now? I know you have your interview tomorrow!! If its any help I was really asthma bad during my pgce interview and was told that day I'd got a place - you go girl I'm sure you'll be AMAZING!!!
I hate that pred debate!! But fortunately I've never been in the position where I've bad to *beg* for it cos its given all too willingly to me - I do find that my medical team want me to be on it longer than I want to be on it, but I think we have all come to a mutual agreement that we should taper to 20mg and see what happens to me this is good cos it means *hopefully* being that step closer to not being on it
I spoke to a pharmacist today about gastric problems associated with meds and he went on to ask a load of questions about brittle asthma (for his cpd apparently!) before telling me he wouldn't sell me anything and to talk to my gp lol.
Good luck philomela xxx
Thanks Laura! I think I'm less worried about the asthma actually during the interview, more that it will make me sleep badly which makes me a bit idiotic. But I have found intelligent things to say in tutorials at undergrad despite being massively sleep-deprived so crossed fingers! Can't work out whether caffeine would help - it might just make me babble, plus I don't really need to add to the Symbicort etc side effects (I tend to get a fast heartbeat and palpitations - I know it's nothing serious but it can be annoying/distracting, esp when trying to sleep).
I hope you get to Alton Towers - sounds fun! Maybe don't take your inhaler right in front of the attendant if you can help it?
Kayla - while I've not been on theophylline myself, from what I've heard about it, I'd rather be on Atrovent! Theophylline seems tricky to get right and can have some nasty side effects, and you keep needing to have blood tests to check levels; personally I don't mind this too much but it would be a little annoying and if you have any kind of needle issue more than that! Atrovent seems more side-effect free than Ventolin on a daily basis (whenever nurses have commented on my really high HR and I tell them I've just had Atrovent, they say 'well that shouldn't be as bad as Ventolin so why is your HR up here?')
Chest been a bit tight today and lots of coughing when sitting outside; also didn't have a great night last night. I maybe should see my GP but I feel like he's seen enough of me recently what with the other problem with my shoulder and sorting out all the referrals (my shoulder scan referral now seems to be more complicated than it was meant to be)! Hopefully my letter for cons appt will arrive soon then I can see whether it's worth seeing GP before depending on how long the wait is. I do want to give him a thank-you card though as he's been particularly amazing recently. He probably wouldn't mind seeing me again, I just feel like he could do with a break from sorting out my stupid complicated issues.
OK best be off to bed I think so I can get lots of sleep for tomorrow. My MSc supervisor told me if I am first choice they could tell me on the day - if in the running but second or third they would wait for the first choice to decide and then maybe ask me if they say no. I was a bit late deciding to do a PhD so missed a lot of funding deadlines for this year; if I don't get this one I'll be applying for jobs and hoping to do one next year when I'll be more in time for the research council funding.
I think it's funny when people use me for their cpd! When I was had a GA in Feb the cons (who is one of the top max fax cons in the country, advises NICE etc) wanted to stay in the anaethestics room to watch how they deal with a servely asthmatic patient. I felt a bit like a training video!
I am hoping it won't get to atrovent but good to know it is an option my GP can try so not waiting until the summer holidays. Philomela - I looked into Theophylline when it was mentioned at my last cons appointment and thought it sounded a bit tricky. That is a reason to put off trying it even though my cons thinks I could benefit from it. I don't mind the blood test itself but always find them hard to schedule!
Philomela - just wanted to say good luck for tomorrow and I hope your lungs allow you to get some sleep.
Good luck Philomela.
I've managed to make it through the week although didn't sleep well last night and got the whole you look dreadful line this morning. Was very tired and not completely on top of things which isn't what you want with a building full of inspectors and governors but they weren't observing me so was ok. Now very tired so trying to get an early night but worried about the outcome of today's inspection.
Laura and Kayla, glad you're both feeling a little better and getting on ok at school.
Philomena: best of luck on your interview and hoping it all goes well.
Hiya, how are you getting on? Hope the pred has kicked in
The cpd thing made me smile the other day, I also bumped into a couple of junior doctors a few days ago while coughing and got into an interesting discussion - one of them had done a placement on a resp ward!!
Theophylline has been mentioned to me too, but I think that's on the list of things to try if all else fails, I HATE blood tests being done - massive phobia lol, The side effects don't sound too good either!
Have you got on ok at work for the rest of the week?
Philomela - how was the PhD interview? Have you heard anything yet? Hope your lungs behaved!!!
Laura x
How is everyone? Hope recovering.
Thanks for good wishes for interview! Not too bad thanks - think it was ok though depends on the other people there (oddly enough we all met each other which was an odd situation to be in as we got on quite well but knew only one of us would get it!) Couple of things I'd like to have done better but was ok. Will hear hopefully within a week, fingers crossed!
Lungs behaved ok at the time but my first train was slow and so I missed my connection - had really run though flat out and it made my chest REALLY hurt! Wasn't a prob for the interview, they were really nice about it, but later on with that, and maybe the pollen count (still have trouble believing that affects me!) and sitting on a very hot train on the way home, I think my lungs got unhappy with me - nearly went to OOH last night and it was no better today so did end up going. Was good though (see other thread) and now have the pred which I suspect I needed before. Will see how that goes.
Hope you all have a restful weekend and deal with the pollen! I could really do with another neb...supposed to be singing in a concert this evening! And singing tomorrow as well - maybe not with all the incense.
Philomela - I'm glad the interview was ok. Fingers crossed for you.
The pollen certainly has a lot to answer for this year. All my class are sniffing and sneezing too. I'm glad you got the pred (as you said you probably needed it anyway) and hope it kicks in soon. I'm thinking my weekend will be spent locked in my house again rather than going to concerts (still at least I am getting all my paperwork done!)
A quick update on the ongoing saga of getting someone to tell me when I need help etc.
Went to the nurses today mainly as I have changed to MDI and spacer and needed to be shown how to do it but also to mention the fact that I don't know when to class my asthma as bad at the moment. This also turned into a ""well appointment"" so many people have recommended on here as I am on the last day of a 10 day course of pred (including a quick taper) and had a relatively easy day at work inside so hadn't taken my reliever in over 12 hours - a bit annoyed she didn't take my pf which was probably at least 430 (usually 350 or less when I go in with symptoms).
She said that the asthma plan would be to take my seretide and hayfever tablets as prescribed, extra Piriton if hayfever symptoms and Bricanyl if asthma (she said she could write it down but made it sound like such a chore and only got a notepad out. Apparently any plan would change a lot as I am currently trying different medications. She said the amount of Bricanyl I sometimes take is way too much but didn't offer any advice on how to reduce this. When I asked about what peak flows should be she said it wasn't much good going off that as I did up and down so much. So I asked when should I be contacting you for advice? Instead of answering this I got a speech about how it is difficult because when I go they see a healthy person with good O2 (however my O2 is usually 100% when not struggling) and peak flow only slightly low. I explained that this is because I respond so well to my reliever and should I not take it before visiting (the response was this was not a good idea as I could spiral quickly and then they would struggle to control it). Apparently I am a difficult patient to treat because of this and they (but I think just the nursing team) think it is probably psycosomatic. She did say that just because I am difficult to treat and they do bash their heads on the table sometimes, it doesn't mean it is any less real or difficult for me.
Anyway this leaves me with three unanswered dilemmas/questions:
1) is it worth perusing the asthma plan (maybe with a consultant). If I have difficultly getting pred again I may discuss it in light of this.
2) if I am struggling, how do I get the doctors to see me with symptoms if this is the only time they will treat it? Last week I phoned up and spoke to the GP while having symptoms but there were no appointments to go down. Saw another GP in waiting room while picking up prescription who saw I was struggling but obviously nothing was recorded.
3) My cons has suggested some things to try if symptoms no better. Pred has picked me up but still can't go outside and am waking each night. Would this warrant adding something on or just wait?
Sorry to moan. Was hoping this would be sorted and don't really want to change doctors as the two GPs I try and see are great.
Hi Kayla,
That sounds frustrating - glad you're doing better now though! The pollen is insane atm! You do sound a bit like me in several ways, and I suspect 'psychosomatic' is something they come up with when stuck. I don't think this nurse sounds very helpful - perhaps you should stick to seeing the helpful GPs? I think you might get further.
1) After last weekend's little episode I'd say persist with the plan - I'm sure I could have avoided that if I'd had one and I think it would be helpful for you to get one in place. When do you next see your cons? Could the GP give you one? The AUK nurse advised me to order one of the AUK templates as she said it would be harder for them to ignore if I bring one of those.
2) Hmm difficult - have the GPs ever said this or is it just the nurse? I understand your dilemma but it seems like it's a thing of the nurses - ridiculous to expect you to always have symptoms right at that moment esp if she doesn't want you to stop taking your inhaler beforehand! She really doesn't seem very obliging or helpful.
3) hehe my GP asked me this! I have no ideas I'm afraid (I was given a stronger antihistamine and told to keep on with the nasal spray but think you're already on both?) Ring AUK nurses again for ideas?
Sorry I can't be more helpful - really hope you get somewhere soon!
Oh and I didn't get the PhD however interview went well and I did get a very encouraging rejection letter, if there is such a thing. Thanks for all your good luck wishes everyone! My GP has told me running for trains, even for interviews, is a bad idea.
Hey, sounds like a real mixed bag to process!!
I would say definitely peruse getting an asthma plan, is there a respiratory nurse associated with your consultant? Could you perhaps have an appointment with her? I have one with the one at my local next month (well sooner cos current hosp resp cons wants me to have a follow up cons appt with my own asap).
With when to get help, could you give yourself room with a certain amount of reliever in a certain time frame and if it doesn't work then make the decision? This is very much what I have been told - ""if x amount of salbutamol doesn't do this in y amount of time call 999/walk in/gp etc"".
Are you feeling ok now pred taper is coming to an end?
Hopefully pollen will stay down a bit now!
Laura x
Thank you Philomela,
Your post was very helpful - infact I was hoping you would reply as we do seem to have quite a lot of symptoms in common. I love that no matter how difficult you're described as, there is someone else on this forum that is similar to you (makes me feel much less of a fraud). I think they find it hard to understand that I am not symptomatic all of the time. I thin the only reason she thinks I am at all is because in the past I have been hospitalised and blood tests etc. always indicate asthma! The annoying thing is that she can be lovely and really understanding but I agree not helpful when it comes to asthma! I think there is also the issue that I have had panic attacks in the past so maybe prone to them again (although this was at a very difficult time for me personally).
I have taken a copy of AUK plan to GP but it was the day he phoned for urgent cons appointment and wanted her to see me before suggesting anything. I will take that again next time (didn't take it today as I know the nurse gets a bit twitchy if you get advice from elsewhere). Some of the GPs won't treat me unless I am wheezing which is why I am trying to keep it to the two who are a bit more open minded (one saw the fact my throat was irritated and I was tired and understood this was the effect of asthma symptoms (she is always telling me how pale I am too-I'm very fair anyway).
Not sure about extra medication. I take 180mg Fexofendaine (don't think you can go any more), avamys which I think does work but not totally relieve symptoms and is the preferred nasal spray according to my cons (also allergy cons and ent prescribed this last year for my sinus problems too). I do take Piriton when really bad too. My cons has suggested try Omeprazole if still no better (to rule out reflux) or atrovent. I just don't know how much I am expected to put up with before saying can I try it (I may be getting paranoid but I think some people - including not so useful asthma nurse - think I am asking for things just for the sake of it! My next appointment is the end of July so have a little while to wait until then.
Sorry to hear about the PhD but an encouraging letter sounds better than just a ""no thanks"". I hope you are starting to feel a bit better too and am so glad your hostel experience was a good one (well as good as being in can be).
Take care
Laura - I seem to have missed your post yesterday!
I'm feeling much better after the pred (finished taper today) and hopefully the pollen will make it easier to stay that way. Only took my inhaler three times in 24 hours yesterday and I was at work (although we had a visiting poet and then PPA in the afternoon so didn't do much). The nurse did say ""Well done"" when I told her this! I haven't been too bad today either as sat at home writing reports!
My cons does have an asthma nurse and asked if I wanted an appointment to check inhaler technique. I went with the one at my surgery so I can get an appointment after school but may see if I can see the one at the hospital for an asthma plan in the summer (as it is something I will be pursuing with my cons). I am hoping my appointment with the physio also comes through for the holidays. It is a shame the good asthma nurse (who usually looks at my pf diary and tells me I need pred even though sitting there I am much better than I have been recently) is only a locum as she is fantastic.
I am usually quite good at saying to myself this reliever isn't working for very long/needing more to work so need to get help (just not good on acting on this advice) or symptoms are getting worse/needing reliever a lot so need pred. However, recent experiences of being dismissed by different people have knocked my confidence in this decision. In the past, I would not be happy to need my reliever a few times every day (even when asthma was really bad about ten years ago) but I am not sure what to expect at the moment. I therefore don't know whether to make an appointment with my GP add extra treatments (recommended by cons). I think I may give AUK a ring on Monday for advice.
How are you feeling today? It is good that they have treated you so well and may help you to get help next time. I hope you manage to escape soon.
Take care
Hiya,
Finally starting to feel ok enough to post thought out things lol. I am so happy for you that the pred taper has ended and that you seem to be ok at the min, reliever 3 times in 24 hours sounds good though obviously it would be ideal not to need it at all - with what guidelines etc say lol, if only things were that simple eh?! Just take it easy and follow your own advice.
I am better than I was ... certainly much better than I have been for over a week when I had a great few days. And much much better than I was when in recus the other day - I am (I think its because I am a lot better than I was) really struggling to process what has happened, the severity of this attack and what the staff and consultants etc have said would have happened to me if I hadn't been in hospital at the time.
Fortunately being pumped full of lots of different drugs (actually via IV - let them do it!), constant oxygen being given via nasal cannula and I cant even remember how many hours of back to back nebs seems to be pushing me towards the right direction.
I am not sure when I will be allowed home, but when resp cons visited me in ITU yesterday he told me to book a GP appointment for Monday (as if I am still in I can always cancel!), so I am hoping that perhaps they might allow me out tomorrow?! I do feel more normal now.
I am no longer (as of earlier today!) on constant oxygen, and trying to maintain oxygen levels without ... its starting to behave more now and have been prescribed a neb every 4 hours - the biggest thing seems to be maintaining the O2 sats. If they stay above a certain number for a certain number of hours I can go home. They are now encouraging me to self medicate with my inhalers to try and get some control before getting home, but I can still ask for the nebs.
Will they do ABGs again before I go home ... I HATE them now When do you reckon they'll let me escape?
Its weird tonight, I feel more normal and able to write without losing patience, but I feel really strange still ... more so than last night. I do not understand my asthma.
My pred has been put up yet again but because of the severity of this I think its necessary eventhough I hate it!
Laura x
Laura
Sound like everything is doing it's job from your other post and I hope you manage to escape today with ABGs! Make sure you take it easy though! I know what you mean about feeling strange - when I had severe attacks and was in hospital, I found that it was a few days after when the real strangeness began. I suppose when you are really poorly you don't have time to think about it and then when you feel better you notice (if that makes any sense). I also found this with moderate attacks - when I was at secondary school, my care plan said I could carry on with the day after these if breathing better but I found I just felt odd after and usually went home(the teachers probably thought this was just as excuse!)
Think I will phone AUK in the morning as needed reliever a bit more today (only walked to a friend's about five minutes away but there seemed to be a lot of pollen about). It may be that this is something I need to put up with (rubbish asthma nurse said she hoped this will all get better when hayfever is over) but I know they are not happy with me using so much. All the more reason to get an action plan!
Also got physio appointment through yesterday (for next week!). Not sure what to expect with this or indeed why they think is a good thing (I suspect it is something to do with the possibility of it being psychosomatic). I don't think I have a breathing pattern disorder as I can usually control breathing well (part of doing music and support) but I know I am a mouth breather as always have blocked sinuses from allergy - could this be a factor?
Take care
Said this on other post but yes crossing fingers Laura! I agree re afterwards -I felt odd on Wed, not up to much (still pretty SOB tbh, they did give me option of staying if I felt I wanted to and still needed the nebs but I really didn't want to stay). Had had plans to go to London and do stuff, everyone was telling me not to and realistically, for all sorts of reasons, energy as well as the breathing, I did need a day at home doing very little; I found I couldn't really even face going down the road and it wasn't just the breathing.
Hope AUK can help Kayla and you can get something sorted soon - glad you're mostly feeling better though! I hope the physio can help - I kept getting sent to physios because they kept saying it was psychosomatic, and tbh a lot of the time it didn't really help. This I think was a) they assumed I didn't know how to breathe and actually I do know what I'm meant to be doing, it just doesn't always happen (also a singer etc) and b) they were trying to fix the whole thing with physio whereas I know now it's only part of it. And though mostly they were lovely, one of them really wasn't very helpful - she'd tell me I breathe badly during exercise (true) but that I needed to do more exercise, without ever showing me how to breathe better when exercising, and though she seemed to accept I did have asthma as well, she never seemed to take into account that that might make it hard to do vigorous cardio stuff like she wanted me to!
I did however find the physio helped when I got a really, really good one, who basically took everything on board, really listened and said that while I did seem to know the principles of how to breathe properly and got a good score on the questionnaire they give you (on the numbers, I don't have a problem) she could see that I basically wasn't always doing it right and needed retraining - she didn't just tell me 'you need to breathe from the diaphragm' but actually gave me exercises to practise so it could become second nature (apparently I breathe too fast some of the time without noticing and it was driving down my CO2). She's discharged me now, said I had improved though still needed to work on it - I felt that too - but that there was more going on there than she could help with through the breathing exercises. She also did specifically say, because she could tell I was worried about being told it was anxiety, that it's fairly common to have this problem with asthma and that while it can also be linked to anxiety etc, a lot of people have it with no anxiety or panic probs at all.
I have no idea if this is helpful at all, but just wanted to say I was pretty sceptical as like you on the surface I didn't seem to have a breathing pattern disorder - GP found it hard to believe too! - but that the physio did help. Even though it's not the whole story, if you have any problems there hopefully physio can help a bit. Just if they start getting too basic about what you need to do, tell them that you know how you should be breathing but want to be sure you're doing it all the time without thinking!
Philomena - on breathing during exercise, when I played a lot of football we used to do specific different breathing types while doing interval training (jog/sprint/walk on command). One of them was a kind of 'pant like a dog' breathing, where you stick your tongue out and totally relax all your muscles except for your diaphragm. Feels and looks ridiculous but it's very effective. If you did feel that you wanted to work on that side of things a bit more, I'm sure there will be fitness-based videos online that give you clues for that sort of thing.
The other ones I remember were breathing like you're blowing up a balloon, nose-only breathing (if you could - not so viable in January), and 'natural' breathing. Almost all of us found that our 'natural' breathing was less effective at re-oxygenating than the weird ones. So... having sub-optimal breathing during exercise seems pretty normal, even among people who do lots of exercise.
The dog-style breathing is deffo the best. It always makes me smile when I'm out with my boxer and she's been running around - she does SUCH good panting!
Thank you for that information Philomela and I hope you are feeling better.
Yes I am quite sceptical but I feel some (not all) the people treating me believe this to be all psychosomatic (the asthma nurse implies it is just bad hayfever - but that may be just that I was really annoyed with her on Friday). I think having a history of anxiety doesn't help but I can definitely tell the difference between panic and asthma (panic is not sorted with inhalers etc). (Also have a bad experience of physios who really damaged my jaw with her exercises after an operation to make it better!)
The appointment is just for an assessment and my cons referred me as another approach to try (which I am quite grateful really). I probably do have some bad habits due to not being able to nose breath for a lot of the time and I think I also have a tendency to breath quite quickly (resp rates are often moderately high) so it may be more helpful than I thought. I suppose I am just quite annoyed that there are several medical people who don't seem to be taking recent flare as a problem! I hope I get one of the good physios!
hehe thanks for the tips Curiouser! I've had a dr make me do the panting breathing when he was listening to my chest - god it was embarrassing lol, and he had an intern person - a junior dr from Spain - shadowing him as well so I had 2 people watching me make an idiot of myself - at least he was behind me! He said I could have a break after a bit as it would be hard work but then made me go back to breathing deeply with my mouth open which is also hard work and which I also thought was not approved of by physios lol. I do actually find mouth-breathing quite hard work.
EDIT cross-post - thanks Kayla, yes I am! Crossing fingers for you, defo worth a try then. Might help with at least some of it, but I do know that feeling when you wonder if they're pushing you down the 'in your head' route. I hope you get a really good physio.
Thank you for the well wishes. I am going to post in the other one which Philomela wrote in, so not going to duplicate LOL - Kayla I will try to quote your response on there if I am clever enough to work it out lol.
I totally understand what you're saying with the physio and feeling as though the experts think the symptoms are psychosomatic, but you and the majority of other people know that this is not the case. Perhaps its just a hoop that you might have to jump through to pacify them, but then it might even help on some unconscious level. I don't know that I would take to kindly to being sent for physio though. I feel really genuinely lucky that I haven't encountered any of the psychosomatic c**p whilst being admitted these last few days.
Perhaps just try to see it as a means to an end, best case scenario it will help (even if not with asthma, but perhaps music or something?!) worse case scenario, you'll feel as though its a waste of time.
Laura x
Glad you have managed to escape and hope you can stay out. It sounds like your good experience this time (as good as it can be) as helped you get help next time you need to be admitted. Remember to take it easy though too!
You summed up my view of it perfectly. The first appointment is just an assessment to see if I will benefit it from it and I think it may be of some use. Just a bit annoyed about the psycosomatic implication of it (which to be honest as only be said by the rubbish nurse). Also feel a bit cheeky asking for yet more time of work too! I do wonder what they would be thinking if I didn't have the severe diagnosis from years ago (the cons I saw a few months ago that explained it this is still the best diagnosis as it links to the allergic component and I seem to stay out of hospital as I respond so well to treatment. Although this is making it difficult for people to take flares seriously (I go all happy as I jave just had a lot of reliever), I do realise how lucky I am.
Back to the report writing-last push to the end!
Take care
I wont wait so long for help again. a slow crash and burn followed by a severe acute is not something I want to repeat. Just glad I was in already! The people were amazing!! So reassuring and no hint of the psychosomatic ideas. Perhaps its because though still didn't have a great wheeze (and have a really bad chest infection on top) my blood gasses were really misbehaving!
Try not to worry about the silly nurse!! I was reminded (LOTS over the last few days!) that I know my condition better than anyone and am therefore the only one who knows what I need and when!!
Are you struggling again?
Good luck with the reports ... I have been told not even to set cover work couldn't for fri anyway as was in ITU. According to my mum work are being good and Ive had a lot of lovely texts
Laura x
I'm glad work are being so supportive. I keep thinking to myself that they know it is genuine but this is my first year in a new job and I think I have had more time off in this year than the total six years at my last school (as well as Asthma, I have had several stomach bugs and an operation in Feb - although a week of this was over half term!)
As for the silly nurse (this is now what she will be known as), I'm trying not to think about her! It is such a shame that, as the respiratory specialist, she is the one that my cons contact if necessary and if you tell the receptionists you are making an appointment for asthma, they usually make it with her rather than a GP (hard to get out of unless you actually say you find her rather rubbish).
I wouldn't say I'm struggling compared to the past few weeks but starting to get symptoms again. As I said before, I am not sure whether this is something I need to accept. Pred seems to be working (was totally fine at end of taper) but then the effect wears off. Changing the Seretide should also have made an improvement by now too. I know the doctor is reluctant to give anymore pred (had 17 days this flare) unless really bad (as in not responding to reliever) but I do know there are other things I can try before seeing cons. Although I don't want to take any more medication, it seems silly to not have optimum control if there are other options and I suppose it is better to try them now than when really bad. There will be a huge wait to see preferred GP after work so will book an appointment tomorrow.
Take care
Silly nurse is truely silly to equate physio with psychosomatic. Most people breathe sub-optimally. If it weren't so singing and teachers and athletic coaches wouldn't be wasting their time on teaching people how to breathe better.
in reply to
Silly nurse is truely silly to equate physio with psychosomatic. .
To be fair to the silly asthma nurse, I think she is just very blinkered when it comes to asthma which doesn't fit into the nice little boxes. Although Beth she does (wrongly) seem to think I have been referred to the physio for panic related SOB. I do think the physio will help as I know my breathing is not optimal (I'm a mouth breather which was noticed by my cons). I sometimes wish I could show her my posts as I think it will show her my frustrations at the moment. However, I have just been in to get a Bricanyl prescription and she was in the reception as I was trying to explain to the receptionist that I need to speak to a GP to discuss possibly trying new treatments (but maybe it doesn't need a full appointment and it is not urgent for a duty doctor). Nurse commented on the fact that I am getting through a lot of Bricanylat the moment and that I look like I am struggling and do I need Bricanyl now? (talk about a total change). After a quick chat, she told me that she doesn't know why I am questioning my management as I am usually quite good and perhaps we need to have a chat about how to manage on-going symptoms. I wanted to jump for joy and say this is what I have been asking for the past month! (only started to cough uncontrollably!) She did say that I probably need to expect a few symptoms over the hayfever period but should not be having to avoid going outdoors and waking every night. She even went as far as saying that if SOB and cough gets much worse I should be thinking about getting immediate help! Not a great plan but confirmation that I don' need to put up with this and am right to be seeking help. I'm not getting my hopes up but I think she may be starting to understand!
Hiya, been readmitted - Grrr. But this is not why I am posting lol!!
My cons sent his asthma nurse to see me whilst on ward and she spent a lot of time going through things and reassuring me that there are things we can do.
She then went on to get an action plan out and fill it in with me. I must say that I already feel far more confident having a ""black and white"" plan!!
Also I felt that my call for help yday was far too early - but apparently that's when I need to get help
In all of my rambling, what I am trying to say is keep pushing for your plan, i think it will make life so much easier!!
Are things still calm for you?
Laura x
re being readmitted Laura - though did I see on your other post you're escaping soon? Glad you've got a plan though - hope that will help for next time (and hope there isn't a next time). I hate to say it but if you were blue-lighted in, I suspect that probably, you didn't get help too early! Your team does seem in general to be an absolute model of what they should be like which must be reassuring even if the asthma itself is being a pain.
Kayla - glad asthma nurse may be coming round! That would help having her on board properly I guess. I know what you mean about nice little boxes though - probably great for asthmatics who do fit in those boxes but not for us 'weird' types.
Spoke to the AUK nurse today as having a bit of a pred dilemma - she was amazing, just can't say how good, and even remembered she'd spoken to me before (probs more than once but she remembered a particular time). She said cons's asthma nurse might be able to help with a plan before I see the cons even if I can't move appt forward (which I can't, caused enough trouble already). A plan is my no1 goal now as while I may not be brittle or severe, I'm not very good at knowing when I need to do something and I actually like someone else telling me what to do in black and white like you say!
That asthma nurse sounds amazing Laura - there is also an awesome one in my local, shame the cons is just not nearly as good and I have to be all awkward lol (cons had told me it was in my head when I saw her before which is why I asked to go elsewhere, figured she wouldn't want to see me either).
Laura - sorry that you've been readmitted but glad you've got the plan (and sounds like you're escaping soon too). I certainly need something in black and white, especially with all the trouble I've had recently.
Philomela - getting in touch with the cons nurse sounds like a good idea. I was offered an appointment with their nurse the last time I saw the cons but said I would see the one at my practice as the times can be better with work.
I feel I need some black and white too. Maybe not in the this is when you need to go to hospital way (I rarely get that bad) but these are the symptoms where you need to see GP. I did have this when I could up my preventer (although not written down) but feel this has been lost these past few years which is why I always seem to be at the doctor's!
Was feeling better but the pollen has been ridiculous today so am struggling (taken loads of Piriton and Bricanyl). Have been slowly getting worse since stopping pred but trying to wait until I see my GP on Monday (I am pretty sure he will not prescribe pred again unless really bad). I need to clarify what is realistic in terms of symptoms and control at that appointment (I'm not sure whether we should add something or just be happy with how it is) but he wasn't happy to do a plan last time.
Heya Kayla and Philomela,
Thanks for the well wishes. A bit of a shock to need blue lights.
I escaped a few hours ago. Lungs very stroppy, but nothing unmanageable, think I will manage to stay at home. Myself, my cons and resp nurse don't really feel that control beyond the yellow zone is achievable at the moment (Other than brief ventures into the green and dipping into the red (below 40% for me)), know that its not ideal, but something I have to make the most of
Kayla - black and white is so helpful (or I think it will be in crisis) because it means that its not as subjective etc. Mine also states at which point I need to up the pred and when I next see cons the meds I need treating with at the crisis point is going to be written on also. Then pollen is insane - think that's what is responsible for yesterday. Perhaps increasing ICS would be an option or adding something else? I agree that pred isn't ideal. My cons has decided my maintenance needs to be 35mg at the min
Philomela - I hope there isn't a next time either (wishful thinking I think though - damn lungs). My team are awesome. The cons and resp nurse had a really good talk with me and decided that at such and such a point I need to ring the nurse (now have her direct number) to be fitted in that day (or the next if stable enough). I really do feel lucky I will be a bit upset if my cons decides I need a referral to a specialist brittle asthma clinic, cos I feel as though I have a good relationship with them where I am!!!
I think there are some seriously special asthma nurses out there - I only met mine today, but already think she is awesome
I really do think that proper action plans are soo important!
Take care!
Laura x
Hi everyone,
Just thought I would update about a good GP appointment I had today. I inially went in to discuss whether I should try something else as the cons suggested (has been nearly three weeks on MDI Seretide and I think that the improvement is mainly due to the pred course). He was shocked that I would question whether it is acceptable to still have symptoms everyday and stop activities like going outside and running (he did say I would have to be careful but should be able to do these things). Of course I knew that in theory this is what we are aiming for but past experiences have made me question this.
On the back of this, I brought up my favourite topic and I now have the beginnings of an asthma plan! At the moment it is just a guide that I am obviously aiming for no reliever but this is unrealistic at the moment so I've been given instructions about what to look for (very symtpms based) if it is getting worse especially of happening for three or more days. Then this is when you need to call us to be seen quickly (he even said to tell them to speak to him or look at my notes which will say I need to be seen and will need to consider pred (even if chest clear). Then there is the 999 bit (same as usual). It is by no means an extensive plan but a guide to help me know what is good. He was impressed by the plan AUK sent but said we can sit down and look at it when I have a bit more control (at the moment would be in yellow zone a lot-not ideal but they are monitoring it closely). I still can't believe I actually got someone to sit down and discuss this with me (for over 20 mins as he was free after me) and write it down too. Hoping I won't need it as on advice of cons, he has tried Omnaprazole to see if there is an element of reflux.
Late replying, sorry (been in London doing my experiment, frustrating but just about survived) but woop woop!!
So glad you seem like you're finally getting somewhere and had a productive appt! I think it does help to have someone acknowledge that you should actually be able to do most things and that they shouldn't settle for less unless they have to. I've been very frustrated with some drs as they seem to just shrug and say 'so what if you can't do xyz you normallly do, you're not in and out of hospital or having severe attacks' and I want to scream at them would THEY like it if they couldn't do xyz normal things (not even talking scuba diving etc or anything)? So even if it doesn't always happen, I think it's great that your GP wants you to be able to do things and not just settle for second best.
I also had a good GP appt on Monday (review after another trip to OOH Sat night where I nearly got admitted but escaped) - again I was last in the day, not my normal one but she was lovely, got a chance to talk things through and gave me a more workable plan for pred reduction - try dropping to 30mg when I feel it could work, then down 5mg every 4 days and when I get to 5mg down in 1s. She also commented that despite me obviously being SOB (apparently lungs were very quiet again and she said 'well no you're not going to be wheezing given that requires air to be moving') I seemed to be more 'relaxed', using accessories less and speaking better than when she last saw me a while ago - think physio has defo helped there, so your trip to the physio may be helpful even though it won't be getting rid of the asthma! I think I would be worse off now without that.
Hiya,
Sorry I've not replied before now, been going through a pretty rough patch over the last couple of weeks. 3 admissions, experiences in resus, ICU and CCU. But out now and hoping to maintain some control!!!
I saw my awesome asthma nurse at my local hospital today who has thoroughly debriefed me about my recent experiences. She doesn't feel that I have a breathing pattern problem, but she is referring me to a physio just incase.
Just to try and reassure you not to worry that you'll be dismissed. I kinda feel as though its clutching at straws.
Hope you're doing ok otherwise
Laura x
Thanks for the reassurance re physio. Unfortunately I was I'll last week with a stomach bug so missed the appointment. However the physio on then one sounded lovely and is sending out another appointment in time to see her before my cons at the end of July. Like I said before, it is not going that worries me (as I know I mouth breathe) but the fact that it was put to me in a way of ""well it can't be asthma because your pf is ok so is probably panic/stress"" from the not so helpful asthma nurse.
Philomela - my GP is very good at the pratical side (and I am glad I am on track a bit more with my practice as a whole). He is a keen cyclist and so if I talk about sport this seems to hit home a bit more than I am struggling to clean the house/car etc. Saying that Scuba Diving is one of my dreams (I know it will never happen though).
Laura - I hope the hospital have managed to stabilise you a bit as your admissions sound really scary. I hope the physio helps in some way to.
I think I may be having to test my plan soon as I have a cold on top of hayfever so pnd is terrible at the moment. Pf is dropping, taking more reliever and more symptoms so unless it picks up soon, I will be at the point of ""get same day appointment to consider pred"" stage. Taking it easy today to see if that helps.
How are you doing now Kayla? Did you end up on pred in the end? I'm curious to see how your plan works. Hope you're feeling better though and NOT on pred.
Glad your GP is helpful - I so much prefer it when they are practically minded and THINK about how it affects things.
Re physio - hope that goes ok! I am kind of a convert but that is because I had a really amazing physio who listened and was practical about things, and realised it wasn't as simple as others made it out to be.
Hi,
I had a visit to OOH on Sunday but they were so much more responsive with a plan in place. Even though my symptoms were similar to previous and the I has seen the doctor before, they listened and gave me a pred. They offered me a neb and said to come back any time in the night and say I had been seen before if I felt I wanted one later. While I hate pred, I know If I get it quickly then I only need one course and it gets me back quite quickly so my Monday I was feeling much better.
I am actually feeling a lot more in control with my plan and seem to be taken more seriously when I do ask for help which is good.
Are you still struggling at the moment?
Hiya,
Sorry been meaning to post for ages!!!
Sorry you've yet again been having such a rough time but glad that your action plan seems to be working. Just a thought, do you have any emergency pred at home to start if you start to struggle? I know a few on here do. Things are different for me as I am on maintenance ... but my plan says when to up the pred and then how long to stay at that level.
Cheers for well wishes, hoping that some control is gained soon ... I have a pretty good team who are trying their best. Would rather not have any more admissions.
Hope you're still feeling better and that you are more controlled also
Laura x
Hi Laura,
I don't have pred at home but it is something I keep meaning to ask. Trying to find the right time so they don't think that is all I am after/overreacting etc. The good news is that the pred kicked in really quickly and after five days seemed to have picked me back up again (this has happened for a while as I usually need another longer dose on top of it). I'm putting this down to the fact that I got the pred quickly without any hassle (stressing the importance of a plan). The pollen's not helping at the moment so fingers crossed it will stay this way.
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will have to see how it goes over the wkend.
Same here, the receptionists are great though as they must know me but never openly show that they are recognising me and probably thinking 'not her again' (They also have never queried it or been difficult when I've asked for an urgent appt and have even fitted me in with the dr I request where possible for these appts - cheeky request I know, but I figure it's more efficient for everyone if I can see him and they can always say he's not available). 
good you're seeing cons tomorrow!!
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