Decisions, decisions

Apologies if the answer is blindingly obvious but I often find I need to lay things out to get them straight in my head, so I thought I'd do it here as I might get some extra advice.

Flare-up: mild from last week (Ventolin 4-5x day, more symptoms in between, not sure about nights coughing etc instead of twice a day and hardly any symptoms) Thought it had gone till yesterday when hurrying/cold air/physio treadmill seemed to push it up a notch:

Now: more Ventolin, more often, small gaps, tending to need 4 puffs at a go rather than two to settle things, disturbed night last night though not bad, physio could hear restriction on treadmill without listening for it specifically). PF all over the place, sometimes ok, sometimes in yellow but tending not to go up as it should after Ventolin. PF is of limited use to me. I have no plan.

Options are:

a) Do nothing, take more Ventolin and bury head in sand (not literally, think that would make it worse) and wait for it to go away (preferred option).

Pros: No pred, no dealing with annoying doctors etc, no being told to take deep breaths.

Cons: My lungs rarely respond to the positive thinking approach.

b) Email the CNS at the hospital, explain situation re no plan and not sure what to do.

Pros: Hospital will know I am having flare-up (I want them to so they don't think I've been fine and get the wrong idea); specialist advice, possibly getting a plan for when pred isn't needed.

Cons: CNS doesn't really know me well and tends to the conventional. Will prob go on PF. Might ask me to come in for assessment; hospital is in London, I am not, if I go I will hang around a lot and have to do spiro and potentially get nothing useful out of it.

c) GP on Monday/some time next week

Pros: GP is good, will listen, is open-minded.

Cons: Not sure what he can do except pred ie no plan tweaking as he probably can't/won't tinker with the rest of it, so if he doesn't think I need pred then what? Also, have recently seen him for shoulder issue and vaguely worried even he will start thinking I have Munchausen's.

d) Emergency appt

Pros: quick

Cons: no telling who I'll get, will have to explain it all if not the right dr and one doesn't believe I have asthma.

e) Wait till Monday, go to OOH if worse

Pros: do nothing unless urgent, OOH place is across the road.

Cons: even more of a lottery than emergency appt, might have to defend things with no wheeze/PF etc.

f) Phone a friend/go 50/50/ask the audience (as I""m doing now lol)

g) Panic and start stockpiling tins for the zombie invasion

49 Replies

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  • I'd go with someone who knows your history - which means either CNS (on file even if it is someone else's notes) or GP. If your asthma isn't run of the mill, anything else is a crap shoot.

    What is your reason for wanting to avoid pred so badly? Most people don't get severe side effects from short 3-7 day bursts.

  • I avree with Beth for either gp or cons. Maybe both: email cons and see gp? Though i also like the idea of stockpiling aginst the alien invasion lol! ;-)

    I know no one likes predsomnia but if your sleep is disturbed due to crappy lungs its not much better...Take care.

    Rose xx

  • Zombies, Rose, zombies! The aliens aren't a threat at the moment ;)

    Beth - this is very true. It's not that bad, and probably it's an irrational attitude. I've just had a rather weird thing with pred - it apparently not working first time so never getting the short courses, then getting what I was told (I hadn't thought so) was a relatively long one where I did get side effects. Certainly not the worst anyone's ever had, but I guess it's influenced my views on it.

    Also, re-reading my post I realise it does sound like I'm obsessed with avoiding it, but it's partly to do with wanting a plan for when *they* think I don't need it (and I won't always), since at the moment I don't have anything 'less' for when I get a flare as my normal medication doesn't allow for doubling etc apparently.

    Thanks for advice, it makes sense. Though I was hoping you'd both say a) or g) lol.

  • Thanks for advice, it makes sense. Though I was hoping you'd both say a) or g) lol.

    Lol Philomela, thesse would be my prefered choices I expect. I often put off going to GP/OOH/A&E until I know I really can't cope at home or know I won't be getting better without extra help.

    Although, looking at it with a ""do as I say and not as I do"" head on, I'd say maybe email CNS, as getting a plan for the ""not bad enough for A&E, but bad enough to be a pain in the rear"" situation seems to be needed. Like you I don't have the option of doubling maintainance meds, it's straight onto pred or carry on with increased ventolin and hope it settles of it's own accord. Anyway, I hope you're feeling better soon.

  • Maybe when asking gp/cons for specific thing to do now you can also use fhe problem to press the issue that you feel the need for more of an acrual plan for the in between days? Right. My apologies to the zombies. No monsterism intended there. ;-)

    Take care and let us know how things go.

    Rose xx

  • Maybe you could bury a zombie in the sand and say an incantation?

  • Hmm Beth, that sounds like a plan. Can you get zombies on the NHS? ;) Or indeed a trip to the seaside to bury them in sand?

    I'm still hankering after a) but I guess I'll see how it is in the morning, maybe email CNS tomorrow anyway and cross fingers they just advise on a plan rather than deciding they need to do anything more (though Fridays are always awkward). I'm still dithering because it always feels like the point when I decide to get help is always the point when I start feeling better with a reasonably mild flare, then I look like a massive hypochondriac for bothering them because they only see the ok bits!

    But yes, I think it would be a good idea to press them on the plan thing because I really should have one for situations like this. As I said to the cons last time, it's easy to know that I need to get in touch with them if I'm coughing up green gunk, but not so easy if things are less obviously down the spout, even if preferable for me that they're not!

  • b)c)e)g) methinks (and i'm letting you know now - i have an excellent track record in multiple choice) I'm always keen to avoid pred, i am planning on ringing my GP and trying to convey my hatrid of the stuff and beg not to be increades after tonight's visit to costa (personally i'm going to see how many times i can fit the phrase 'just a little blip' into one conversation) however, much as i hate it, my lungs love it - and i find they are kinder to me if i am generous to them sometimes too!

    If you are a non-wheezer, its always better to see someone you know, and if OOH are there for emergencies then you have a back up (and make sure you have summit on you that says I KNOW I AM NOT WHEEZING BUT I AM GOING TO SUFFOCATE IF YOU CONTINUE TO FLAP ABOUT USELESSLY!!!!!!)

    And you want the hosp guys to know you are struggling, but dont want them to be the ones dealing with you right now - they are probably better for the long game!

    And dont underestimate the aliens - that's what they want you to think! Remember, plenty of tinned goods and lots of emergency vento in the stockpile. also chocolate coz frankly i'd let the zombies get me if i was out of chocolate - what more would i be fighting for!?!

    feel better soon and once you've decided the best course of action could you decide for me too please! i'm very tired and i have an exam tommoz and frankly i still feel about 10yrs old and so these decisions are far too tricky for me! :-)

  • Soph maybe you could ask gp on phone tomorrow what to do (that is my 2am brainwave for you lol) hopping you manage to avoid an increase in pred and feel better soon. Take care.

    Rose xx

  • Ah no Soph, exam tomorrow and costa today? That is so not a good combo! I hope it goes ok, though can you let someone know that you've been in Costa and are perhaps not at your best? Good luck anyway. I would defo ring your GP though esp if you do have an exam so it's all on record etc. Crossing fingers you don't need extra pred... I am however completely in agreement with your views on chocolate, as you can probably tell from my signature (hmm, maybe that's

    h) Eat lots of chocolate and hope the theophylline which is apparently in it will help.

    My lungs and I feel like a couple having difficulties - our interests are beginning to diverge as we have different views on things lol.

    I think my plan is going to be: see how tonight is, if about the same, carefully constructed email to CNS re plan, see how it goes over weekend and book GP appt next week if I have to. Best outcome (apart from it all going away and not having to see anyone - I remain optimistic) would be seeing GP with some idea from the hospital for a plan, because while I appreciate their willingness to get me in for assessment at short notice, it will cramp my style big-time next week.

  • philomena - yeah, i think my lungs target exams with a bit of a vengence! late night steroids in A&E not helping with the whole 'i need to sleep body i have an exam tommoz and would like to be awake for it' thing! and i'm getting extra time to help deal with the fact that it is impossible to concentrate on a page full of numbers when i am so exhausted! and i'm trying hard to man-up and get on with it! sigh! i'm getting todays exam results tommoz - given that i was mid-attack during the exam, im not holding my breath (lol!) hope it goes well with your plan. and im deffo gonna ask GP who to agree with re pred, the GP i saw a few hours before i went in who said there was no point giving me a neb as chances are it wouldnt stop me needing costa (???????) said to up pred, A&E doc said young people shouldnt be on pred so to stop it (????????) hoping he will be vaguely sensible and let me continue with my reducing dose - or only up it a little!

    a and g are my fav options too!

    and the theophylinne is definately theraputic in choc, should be prescribed tbh!

  • Philomela, I think I should tell you that the zombies are just preparing the ground for the aliens. While you're busy burying zombies in the sand at the seaside resort of your choice the aliens will be sneaking in and taking over the world.

    Seriously, don't wait too long before doing something to get your lungs sorted out. I've dithered about the state of my lungs in the past and had a much worse time because I couldn't convince myself that it was time to see someone. Take the zombies with you if you like - it might make you feel better to be surrounded by people(?) whose breathing is worse than yours!

    Take care.

  • Thanks everyone! Emailing CNS seems to be the idea so I will be good and go and do it. If I can write persuasive book blurbs etc I should be able to write an email which persuades the CNS that a)she needs to ask my cons for a plan but b)I do NOT need to come and see them.

    Soph - :( Hugs and I hope the exam does go ok; I'm glad they've recognised you need some support there as going to Costa is no way ideal exam preparation! Hope yesterday's went better than you thought. This is a bad time of year for exams really in general as people are so often ill, and especially for asthmatics, with the weather (I am pretty sure that's what set me off). Hope exams are over soon and you can have some sofa time with a silly DVD and choc.

    Also, wtf - yeah, young people *shouldn't* be on pred but if they have bad asthma it's hard to avoid! I once had a GP (otherwise good) tell me she thought I should perhaps have an echocardiogram but wasn't going to send me for one because I was young and young people aren't in the risk group for a heart condition! I didn't really mind either way but thought it was a bit odd as I had undiagnosed (then) SOB and fast HR - surely if you have symptoms that might be that it doesn't matter what age you are? (I don't have heart issues, it was the asthma but a heart prob was a reasonable thing to think even if I was 24).

  • my lovely plan of ringing the GP so i could at least feel like i hadnt had to see one went wrong. had to battle to get to speak to the GP, but he pretty quickly apologised and told me to get myself down there - dont think he trusts me not to attempt to sound healthy on the phone so i can keep my steroids low! fortunately he agreed to let me stay at 10mg, and gave me the judgement on whether i step down again on tuesday (so you may expect me on here monday asking for a vote hehehe) hope you're plan went better than mine! and dont forget, i am one to try to avoid wasting time (and in my books a telephone appt is less annoying for them) and they still ask me to come down, even though that means i have essentially had two appts in one day - so you deffo arent gonna be wasting time if you ask to see a doc, when you get a good one they seem to have endless patients (and endless patients lol, can you tell im overtired) i had to tell my doc off for gonig on half term next week though - very selfish when i want him there to make all the hard choices :-)

  • I think some of you are already aware but I am that rare diamond that gets to accumulate various rare medical conditions at a ridiculously unlikely age. So I had a stroke and phlebitis at 18 and have now been in heart failure for a year (im 23 now). But stupidly you still dont get access to the sake help etc just because youre young. I should have the auxilliary nurse round to help me get washed/dressed in the morning. But theres only one person available to help anyone under 60. So they dont have space for me. Who sits down and makes these decisions? So stupid!

    Yes Stray I would love to train as a doctor. I am however training as a medical secretary. This is apparently as high up in the medical system as a paraplegic is allowed to go. I have a frienx who is a nurse but since being para is no longer allowed to exerce as a nurse only a med secretary ajd that after much argument etc.

    Sorry. Rant over ;-) Taoe care all.

    Rose xx

  • Thats so unfair and stupid - what do you get to do as a medical secretary? i hope you still get some of the same fulfillment, even if it is not quite what you would chose under different circumstances. TBH, and i may be biased by being a young person, but i feel that frankly if anything more should be done to help a person who *should* be out doing things, and being young and fit and healthy. they should be doing the most they possibly can just to get you as close as possible to that! Yes older people are more likely to need help, and i guess thats why more resources can be assigned to them, but thats not the point! you cant be punished for being ill. rant away! i know i would!

    also, thanks for hugs re exams, yesterday went exceptionally well - i clearly do well under pressure, i got full marks. and this was a realy exam going towards my end or year grade! i nearly cried when i got it back! Im so happy, at least while my lungs are doing their best to ruin university, my brain seems to be on my side! not sure how today went - i was incredibly tired after only a few hours sleep, but i think after getting 100% yesterday, if i crash and burned today then it would really suggest summit about the impact of last night. so hopefully they would be fairly understanding. im just sooo happy. cant stop smiling! Sending some of my joy out to you guys though - think we have all earned some - i dont want to be selfish! :-)

  • So vlad to hear the first exam went brill soph. Fingers crissed for tthe jext lot of esults ;-) thanks for the smile sharing. Great idea lol! Take care.

    Rose xx

  • yay Soph! So pleased for you, that's fantastic news and I hope today went just as well. What is it you're studying? I think you definitely deserve a night off now, if you've finished exams. I am laughing at your attempts to avoid the GP but glad he didn't mess with pred.

    Rose - :( Could you do medical research through the biochem route ie not having to do medical training? Or is it the clinical/people side that interests you more? It must be so annoying when you can't do what you want, and I'd agree that this weird attitude towards young people is frustrating - yes, you may be more LIKELY to get something if you're older, but if you DO have it why should younger people get less help with the same problem? I will say I've generally (except with the ones who said it was in my head) had pretty good response with people saying when I was really struggling 'you're young, we need to get this sorted so you can get on with your life'.

    Stray - I am not even a doctor and I think that's ridiculous re your son. I'm doing a masters in cognitive neuroscience and doing developmental at the moment and I would have thought hold on, if he's got x y may actually be more likely, however unlikely it might be for one average child to have it. You can't assume that the population stats will automatically apply to any specific individual but this does seem to happen a lot (I think I saw on another post that you're another stats geek so am sure this annoys you from that POV!)

    Anyway...what I was going to say was: I emailed a different CNS from last time (there are 2). She rang me back this afternoon to discuss my symptoms and find out a bit more and seemed to get what I was saying about being stuck when pred isn't needed but I have symptoms, and that I'm 'a bit twitchy' atm. She has discussed things with my cons who said given the logistics (ie I'm not in London) I should see my GP for review and 'hold off on the pred till then' (they seem to think I have my own stash which I do not). I think they'd have got me in but have realised that it's a long way for this sort of thing unless they really do want to assess me themselves for perhaps something more major. I will prob check back in with them after I've seen GP to remind them about the plan issue (I am not going to let them forget that now I've managed to raise it! She even seemed to acknowledge PF might not be best guide...I live in hope.)

  • yeah - my GPs are always pretty pleased when i ring - gives them a good opportunity to see me (i mean - if its a really good asthma period sometime i go a week without seeing a doctor - crazy, i know!) my efforts to avoid GPs usually fail. and if i manage to avoid GPs its generally only coz im in costa! I once heard someone say they'd much rather be a GP that a hospital doctor, coz GPs dont have the really immediately life threatening stuff to deal with and i laughed and pointed out that my GPs have to deal with my 'avoiding 999' activities and they have to do it without all the hospital equipment to hand! lol!

    I study maths and philosophy, the two exams were for maths and i just handed in a philosophy essay! Today's might have been ok but its a topic where its easy to make silly mistakes and on two hours sleep i wouldnt be surprised if i made a load of errors with adding and stuff like that (i swear - if calculators didnt exist i actually just wouldnt be able to do maths - i can ONLY do the hard stuff, none of the basics) I have my paper sat on the desk next to me, im feeling a bit rubbish on the breathing front, and it cheers me up when i look at it :-)

    Glad emailing had a reasonably good effect, in that you didnt have to get to london, and didnt have to have pred. I am now actually in a place where i do have spare pred lying about the place, and a prescription for more just in case i have a bit of a blonde moment (there are times when i have had to ring up and be really really appologetic but say that i need them to sort me a prescription roughly immediately - oops!!! fortunately one thing a university GP is really understanding about) but anyway, people always seem suspicious that i haven't been taking my pred when i have it spare - but hospitals throw the stuff at me, i have boxes and boxes left over without even trying! you can borrow mine :-) Good that she didnt rely on PF and good that you are keeping on at them about a plan. My GP today said he was going to email my consultant and say that i was in a place where i felt i had to sit around the flat and deteriorate to a point whee i was really ill before i rang 999 because 'just' needing nebs in A&E is something i am being criticized for! hopefully you'll start to pick up a bit over the weekend and you can feel all healthy and not need the GP (thats certainly my plan!) :-)

  • Yes Philpmena tbh it is a lot of the people side of practicing medicine that i would like. The part that never seems to be there when i need it :-( but i realised something really funny recently. I got my baccalaureat A level equivalent with extra english so it was really easy for me and did it all in costa and passed. Now for 3 yrs have been trying to get through a uni english degree in much the same way. Not what i originally really wanted to do but i reckoned it would be the easiest way to get a degree. That didnt work due to too much costa. But now studying med secretary by correspondance is actually so easy for me because of all that time spent in costa. So alls well that ends well ;-)

    Glad youre cons email went well. Soph I literally have bags of meds and medical equipment. Loads of nearly finished boxes of stuff because i always have like half a box over every month and then every time anything gets changed after a costa visit or by one of my 20 cons they like to redo a whole prescription. I swear they make the nhs deficit themselves lol. Hoping you feel better soon too and dont have to see gp again for a decent period.

    Rose xx

  • Rose, :( re not wanting to do what you want but glad the med sec studying is going well! Would psychology of some sort be an option if you like the 'people' side? Would have thought that was less 'physical' in the sense of what you have to do than medicine/paramedic.

    Good luck for today's result Soph - I do know the feeling, believe me! I haven't done maths at your level but did maths A level and had the same, can't do arithmetic but pure was fine except for silly number mistakes. Same with my recent stats worksheets, I have to check when I hand calculate. But then yesterday was another maths one and you didn't seem too well then so if that was full marks...

    EDIT: Relief. I thought I was going to have to do the urgent appt lottery (and I don't like asking for those for many reasons though my practice has always been very helpful and good about giving them to me and not making me feel like a timewaster), or OOH if required, but have checked the EMIS system just in case and some nice person has cancelled their appt on Mon afternoon with my usual, good GP. So no need to worry about seeing someone who will spend the appt saying they don't think I have asthma, 'oh you have no wheeze' etc, and we can just get on with the immediate issue.

    Though suspect he will be sick of the sight of me lol, since I had to see him recently with a shoulder injury as well.

  • EDIT: Relief. I thought I was going to have to do the urgent appt lottery (and I don't like asking for those for many reasons though my practice has always been very helpful and good about giving them to me and not making me feel like a timewaster), or OOH if required, but have checked the EMIS system just in case and some nice person has cancelled their appt on Mon afternoon with my usual, good GP. So no need to worry about seeing someone who will spend the appt saying they don't think I have asthma, 'oh you have no wheeze' etc, and we can just get on with the immediate issue.

    Yeah!

    Soph - so glad to hear about the exam. Also totally get being able to do maths but not numbers. Ask me to read, understand or define proofs, especially on the algebra rather than the analytic side of math and I'm fine. Ask me to actually do calculations with real numbers and I'm the queen of careless errors. I think it is probably related to whatever also makes me somewhat dyslexic. I understand how to solve the problem, I just can't plug in and calculate all the numbers right.

  • Well, saw GP this afternoon.

    Turns out he didn't know about the fairly hefty dose of pred I had at the end of last year! Oops, I should have told him as he asked to be updated but had thought RBH would. So he didn't know that it does in fact work for me (though was rather taken aback at the strength of that dose), but now he does, has prescribed me 25 mg for a few days and to come back if not better by end of the week. I actually had no idea there were 25mg tablets but it's easier than taking lots of 5s, though always thought it was 30 or 40mg usually for these short courses?

    He did say he isn't sure why RBH are so reluctant to give me pred at all as he said in a 'normal asthmatic' it would be completely reasonable to have a short course near the start of a flare-up to stop things getting any worse and needing more pred for longer down the line. I'd been thinking the same - it's not like I want, or need, another massive dose like in Oct, but it's almost as though my consultant doesn't think in short courses because he's used to dealing with people who need massive ones whereas I was thinking a few days' worth, 'like a normal asthmatic'. Will have to raise that at next appt, because they still have not come up with any suggestions about what I'm meant to do if I have a flare-up and no pred - ask GP I guess as now I know it's not unreasonable to take it even if the flare doesn't seem major, to stop it doing what it has this time and going downhill.

    I'm feeling oddly emotional and I've not even started on the pred yet... Can lots of Ventolin do that to you as well? I think I'm getting paranoid - emailed the CNS again just to update and said things had got worse over weekend, told her GP had given pred for moment but wasn't 100% sure what to do if it didn't work. I guess it sounded like I was angling to go there (which I really wasn't, I don't want to at all because you wait for ages, it's just that my GP isn't entirely sure what would be next so I thought they might have some input via email/phone even if I can't be assessed there) as she said no, we can't see you till your next appt in March and we can't give you email advice because you need to be assessed in person.

    All totally reasonable and I think I just didn't phrase my email very well (I was impressed they fitted me in before tbh with a not so bad flare and I do completely get they can't do it always as they must be so busy) but I'm feeling a little like I've been ticked off and left more or less to my own devices again, given my GP will try to help but is not always sure what to do if the obvious doesn't work. Oh well, hopefully the pred will actually kick in asap and all this will be totally academic anyway.

    Sorry for the rambling, I think my lungs have taken over my brain and I'm not really with it atm so I'm over-analysing everything massively. I'll just go back to my stockpiling tins against the zombie/alien invasion lol.

  • I'm feeling oddly emotional and I've not even started on the pred yet... Can lots of Ventolin do that to you as well?.

    I don't know about ventolin or pred, but having someone take me seriously when I say I'm sick can do that for me. It's one thing to tell (and believe) oneself that one is ill and needs help. It is another to have my doctor take me seriously.

    When my doctor finally actually believed I was having problems severe enough to sometimes have trouble lasting 4 hours between reliever use and came out of his office with a very liberal prescription of ventolin, I was actually angry because even though I knew that is what I needed, I didn't really want to be ill enough for him to agree with me.

    Last month when my doctor got the worry sound in his voice during a phone consult, I spent the whole evening afterwards in a funk. I wanted him to tell me I was being silly, not to sound worried.

    I'm glad you got the help and hope the pred whisks away your symptoms.

    Also I think once it is confirmed that it is true one is sick by a second pair of eyes, it is even easier to fall into the ""what if"" game and get a case of the worries. I think that is just normal. Having worries isn't really what messes people up or makes them into anxious people - it's holding them tight and trying to make them into something that makes sense. If you can, let the worry feelings just be feelings, let them flow over you and away and not hold onto them.

    My guess is that the brush off from RBS is due to the fact that it is already almost March or will be by the time you know whether or not the pred will work. I'm sure if you had a serious (for you) flare whilst on pred, they might think differently about fitting you in and you would also probably feel differently about taking the time to go all the way to London.

    Hope you feel better soon!

    I'll just go back to my stockpiling tins against the zombie/alien invasion lol.

    Gotta watch those aliens.

  • Glad your GP sorted you out with some pred and hope this improves things soon. Maybe youre feeling more emotional just because the stroppy lungs have left you feeling more stressed and tired than usual. Take care.

    Rose xx

  • Hi Philomela,

    Sorry you are still struggling! :(

    I totally get the being emotional bit, when i'm going downhill and i know i'm likely to need to increase my meds/add in extra etc i get really emotional. For me its because i know it will mean days of predsomnia, more mood swings and generally feeling utterly pants before i start to feel better.

    Huge hugs xxxx

  • Thanks Beth and Rose. That does all make sense, though I think for me it's not that it's being confirmed I'm sick so much as feeling like I'm not quite sure what to do again.

    I think it makes sense what you say about RBH and as I said, it's not that I think they're being unreasonable in any way; I can wait. It's just that I never quite know what to expect, from them and sometimes from GP, so although what you say re what they're thinking makes a lot of sense in general, I'm not sure where I stand.

    Last time, for a milder flare, they were saying 'you must be assessed today by GP or A&E if necessary and we want you to come into clinic on Wed' which really did surprise me at the time and I thought it almost seemed like an overreaction though I was very grateful for them paying attention. And they have always said, every time, 'email if you need us' - if they hadn't, I would be much more reluctant to get in touch just to get some advice. This time, for a more serious one, they are doing the opposite, so it's sort of making me feel like they've decided I'm prone to overreacting (although I just wanted to know what options there are other than pred) and they're not going to encourage me. And I suspect I am just overthinking this again and they are simply busy, not to mention consistently inconsistent in their approach much of the time. (See what I mean about paranoia? The pred is going to be interesting).

    Also, I wouldn't say I'm particularly anxious in general, but I am a 'planning' kind of person and I like to know what's going to happen, so that even if I expect something to work (and there's no particular reason the pred shouldn't) I like to have a contingency plan in place if it doesn't - you should see my approach to packing! So I don't like all the vagueness and uncertainty about what I should do when things get worse; it isn't a welcome addition to feeling SOB etc.

    Oops another ramble. Sorry for offloading on here. I think Rose and Angelica have a point, my lungs are having a bad effect on me, so apologies for the rather incoherent paranoid thoughts. I hope I'm not usually like this but am finding it hard to get perspective atm, so pls forgive me if any of you were thinking I should stop making such a fuss.

    EDIT: Thanks Angelica, just seen your post after I hit 'send'!

  • Never stop making a fuss about asthma, you never know if/when it will missbehave big style so always take it seriously (not to be a gloom and doom merchant, just cautious due to experience) :)

  • Thanks Angelica. It may not seem like it but I am actually quite laid-back about some aspects - not about how it affects me on a daily basis as that's the part that annoys me when it's happening, but more that I figure I'll never actually really have a bad attack and it will just stop at some point! I want to plan for it but I don't really believe it can happen to me though presumably it's possible.

    Maybe I figure I'm more likely to be abducted by aliens...or zombies ;)

  • If you are a massive planner then it makes perfect sense that non-information and uncertainty would make you anxious (or in your words paranoid). They are putting a cramp in your style and taking you out of your usual comfort zone.

    And in general illness does that because no one knows in advance that a treatment strategy will work until it does. Most of the time it does or else people wouldn't prescribe it in the first place. On the other hand, most of us who end up with specialists have something that doesn't work as advertized and so we have real and rational experience with the fact that sometimes things that usually work sometimes don't. It isn't just a purely theoretical worry.

    I also find, along with you, that feedback from doctors can be consistently inconsistent. Three months ago my doctor was pushing me to be more aware of symptoms and not just sweat them out. But back then he thought he had solutions. Now that I'm on a very high dose of maintenance pred, he seems to be sending the opposite signals -- what you can't handle with ventolin, just try to deal with unless of course there is reason to believe it could get worse and lead to a significantly lower baseline or very serious flare.

    The thing I'm trying to keep in mind is that these seemingly inconsistent responses aren't a dissing of me or my concerns about being ill. Rather they reflect changing strategies and view about the medical tradeoffs available.

    Another issue is that different doctors have different philosophies about self management vs. needing trained medical supervision. They may all view the patient self reports as valid, but still give very different advice.. Last December withiin a two week period I got three entirely different bits of advice about how much ventolin I could use before I had to see medical attention:

    a) 4 hours

    b) 2 hours

    c) up to *3 times within an hour* (and no advice to come in if I really needed ventolin that much!)

  • Hi Philomena,

    RE your post: I'm feeling oddly emotional and I've not even started on the pred yet... Can lots of Ventolin do that to you as well? I think I'm getting paranoid - emailed the CNS again just to update and said things had got worse over weekend, told her GP had given pred for moment but wasn't 100% sure what to do if it didn't work. I guess it sounded like I was angling to go there (which I really wasn't, I don't want to at all because you wait for ages, it's just that my GP isn't entirely sure what would be next so I thought they might have some input via email/phone even if I can't be assessed there) as she said no, we can't see you till your next appt in March and we can't give you email advice because you need to be assessed in person.

    I thought, I would respond to this, as this is similar to what I have been experiencing with RBH for a few months now. So I am glad that I am not the only one and having read your post -perhaps this is more of their new policy? I used to be in touch with CNS on a regular basis, but recently when things were going down the hill she would simply come back with the same thing: increase pred or go to GP, or if I have very bad deterioration - go to A&E. This created a cycle in which at time I found myself being a constantly re-directed object: I would go to my GP, who when would re-direct me back to RBH saying that he is not a respiratory specialist, I would relay that to CNS who would re-direct me to A&E (even if I am not an emergency), where they would simply re-direct me back to my GP unless I was an emergency... and until I saw your post, I thought they started treating me as if I was simply an attention seeker which actually started to discourage me from contacting them (even thought, they kept telling me to be in touch with them).

    Anyway, what I wanted to say is that you are not on your own in this situation (and neither am I as it seems!) and I hope that things will improve quickly for you :-)

    Take care x

  • ahh thank you so much Beth and Jabby, you have really made me feel better about things!

    Beth - thanks for clarifying that, it really helped to hear it and I'm glad I'm not the only one who has had this approach. It does rather feel like they're not sure what to do sometimes or feel that it's 'normal' or 'I'm doing a lot better' (yes, very true, I am but not quite there yet) so I am left dealing with things which, although I am not severe, if I were a 'brown inhaler and asthma review twice a year' type, would probably have me being sent to A&E. Right now, I have lost count of how much Ventolin I've taken but I don't think I need A&E and there is zero point in going to OOH because all they would do is give me pred which I already have. And I definitely do like to plan even when there can't be one - when I did one of those Myers-Briggs questionnaires I tried to kid myself I was spontaneous then realised I am really not. Also I have to know 'why' even when there is no answer.

    Jabby - ahhh relief! If you are glad to hear my experiences then I'm glad to hear yours and feel that it's not just me. They have been lovely in many respects (my physio is amazing and the consultant has rung me to sort things out) but definitely inconsistent at times and it can be very hard to know where I stand with them at times and what they have planned (one dr says one thing and another seems not always to know what they're on about, plus the clinic letters can be deeply puzzling given what was discussed). Sorry to hear you're having to deal with all this though; can you ask in your next appt what to do? I want to because I am fed up that I keep asking for a plan and not getting one given they seem reluctant to give pred even for short courses. I really hope you get something sorted soon and things get better for you too (if we had PMs I would PM you as obviously don't want to use names on open forum but am wondering who you see).

  • Hey, yes, it is a shame we don't have PMs here.. maybe we see each other next time in the clinic?

  • I hope the pred sorts the lungs out soon Philomela. x

    I understand the dilemas you have with not having a plan and not knowing what to do when you have more symptoms than usual, but don't feel bad enough for A&E. It's difficult when you have no wiggle room with maintainance meds, like we both do, and the next step is pred, which of course, I try to avoid like the plague. You need a plan, so it's worth pushing RBH for this, but it's still not always easy to know what to do when you do have a plan.

  • Thanks Lou. Yep, not many options when next step is pred! Can't remember if I said but my GP is a bit puzzled by their anti-pred thing for me, particularly given he knows they gave me a massive amount in Oct which rather startled him! (I so did not appreciate him listing all the side effects...)

    Now he knows it works for me I think he feels a short course is appropriate for this kind of thing (which at least means I now know what to do next time - I don't want pred either but I also don't want not to be given it if it would help and there's nothing else).

    Jabby - when are you next in? I have clinic on 20th March in the morning and physio in the afternoon 2nd April.

  • I'm glad short courses of pred are perhaps a bit more accessable for you now. When lungs have a wobble for a while, struggling on with lots of ventolin and nothing for the inflamation is just rubbish. Hopefully it'll be a bit easier to see your good gp than it has been though or that he'll give you some pred for home. Having pred at home has made it so much easier for me as seveeral times I've gone downhill on a friday night or saturday and if i'd tried to hang on 'til monday morning to get pred from gp then i would have ended up in a&e and OOH is just such a hassle and very inconsistent. I hate going to ooh, it takes hours to get a call back and even longer to see anyone, and one night they said your chest sounds clear refused pred as it 'wasn't asthma' and said if you still think you're bad on mondat go and see your gp, i ended up in a&e just afew hours later with a pf of 40% and low sats. GP was appalled and gave me some emergency pred for home.

  • Hi!

    Hm.. I am there this Thursday and then technically on 25/03 but will have to re-schedule as I cannot make this date, i usually attend Monday clinic. I'm sure that sooner or later we will probably bump into each other there. I hope things are getting bit better for you xx

  • Jabby - yep hope we do run into each other at some point! Sadly I am usually not there on Mondays.

    Hmm so am updating this thread instead of posting a new one.

    Basically things are NOT improving! I think the pred might have had a chance to help if I hadn't had a busy week, but my PF is actually dropping which often doesn't happen even when I have significant symptoms - it's lower than it has been for quite a while with readings of 420 and even 390 (best is 600) (though that doesn't really count as it was part of a set and I did manage higher, but still). It is also flip-flopping everywhere though the average is lower so no doubt to some it might look ok, but I have found for me when getting worse first it flip=flops, then drops, then wavers. So I am taking even more reliever than I was before, getting really tired (I used to have this before getting proper preventers, it seems to be the effort from breathing as initially the Montelukast/Symbicort/Atrovent made a big difference to this) and basically just getting fed up.

    I am due to see GP on Monday morning but emailed him yesterday to see if he could suggest anything over the weekend. He's normally really good but gaaahhh, has really not helped this time! He said if pred not helping no point in upping it (even though I know it has helped in the past and I told him this when I saw him last week, plus I think this time 25mg is simply not enough particularly since I am insisting, probably unwisely, on trying to do everything as normal, commitments etc, and walk around in the cold even though it is not currently the best idea and I am worse after - I know, I know but have stuff to do!)

    He suggested increasing montelukast. Except that I am already on 20mg which is double the normal dose and really don't think I can increase any more, particularly since I once took 30mg by mistake last year and felt really strange.

    Does anyone have any ideas or persuasive methods re my GP? I really don't know what to do if he has no ideas, because the hospital can't see me till 20th March for my clinic appt and won't advise by email (not sure if they might talk to GP once he's seen me). I think GP does want to help but they all seem so focused on not giving me pred side effects that they are forgetting I do actually at this point need something to be done about the asthma symptoms! I'm not saying it's a terrible attack or anything but I can't just keep doing this. I guess I need to be sensible and maybe stay at home a little more but that's not going to do it all because I still get symptoms at rest anyway.

  • Thanks! Well, I will admit I have not been helping myself and probably should have said 'no' to things this week - but got asked to dep with various choir things and I have zero willpower when it comes to turning down singing engagements! I think though that I am going to say 'no' to my usual Sunday morning service tomorrow because right now I don't think I could deal with all the incense.

    Don't think I will be doing the kettle thing as humid/moist air sets me off as well! But I will try to dial things down this weekend and not go out too much. My GP did ask about an infection and I said it was possible but very very quiet if so; it does 'just' seem to be the asthma this time as I don't feel like I have anything.

    I really have no idea why they are quite so reluctant to give me pred! I mean yes, last time was a long course and it may have done bad things to my Vit D levels, and I did get side effects. But GP himself has pointed out a short course earlier is better than a longer one when it's been allowed to get worse; he just seems to think that it doesn't really work for me. For some reason the first time I had pred, it didn't work (though previous consultant suggested it might be that it had actually stopped things getting worse). So now, even though I told GP it DID work last time and you could see it on spiro results, he thinks there's no point upping it if 25mg doesn't work. grrrrr. I am just going to have to be really persuasive on Mon since really, what else can they do?

  • I don't know if he would change his mind about the dose if you talked about 25mg being a low/unusual dose for a rescue course of pred, even for a child I think. Also 40mg has worked for you in the past and this is a standard rescue course dose. Yes there are side effects, but they're pretty few with a short course and they are insignificant compared to the possible cosequences of not having a high enough dose and asthma being out of control. I'm sure you've disscussed at least some of this at your last appointment, but I hope he is a little more responsive this time. I wonder if he has another solution, but I would guess not, there aren't really any other options other than to increase the pred for an exacerbation, i just hope he realises this. Good luck on Monday

  • I know there is some research out there that argues that there isn't much statistical difference in the effect of 25mg vs. higher doses. For an example see erj.ersjournals.com/content... (from European Respiratory Journal).

    On the other hand, there is also evidence that some people do respond to pred, but pred works slowly or incompletely for them, or else they need a higher dose or need a longer course. There are a number of reasons for this:

    * acquired resistance : some people become less responsive over time. Has something to do with the way receptors on T2 cells work for certain people.

    * clearance: due to certain health conditions and drug interactions (don't remember details) some people clear out a once-a-day dose of pred so fast that it doesn't really get into the system.

    * repeat exposure to triggers: each time you flare because of a trigger, you add inflammation. Depending on how often this happens relative to the speed at which the pred is working, the triggers may be setting you back faster than the pred is getting the inflammation down. Pushing yourself too hard and/or fighting off a cold might be an example of that.

    If your doctor is doubtful that pred is helping but you see some improvement, maybe you could explain where you see the benefit, even if it is partial?

    I've found that helpful with my doctor. Initially my doctor was doubtful about whether I was getting benefit from pred. Sometimes it looked like I did and sometimes it didn't. I'm on a maintenance dose for pred now (hope you don't need that!) because when my doctor and I talked out where I saw the benefit from pred and where I didn't we agreed that even if pred doesn't get rid of all symptoms for me, it does seem to prevent sudden and slow-to-resolve moderate to severe flares. --- definitely a plus.

    Also if your response to pred isn't what it should be and you can't explain it in terms of triggers that are reactivating inflammation, perhaps you may want to figure out the reason for your partial response to pred with your cons?

  • Thanks Beth, v helpful!

    On the other hand, there is also evidence that some people do respond to pred, but pred works slowly or incompletely for them, or else they need a higher dose or need a longer course. There are a number of reasons for this:

    * repeat exposure to triggers: each time you flare because of a trigger, you add inflammation. Depending on how often this happens relative to the speed at which the pred is working, the triggers may be setting you back faster than the pred is getting the inflammation down. Pushing yourself too hard and/or fighting off a cold might be an example of that.

    If your doctor is doubtful that pred is helping but you see some improvement, maybe you could explain where you see the benefit, even if it is partial?

    Yeah I will try though it will be hard - I am not so much going on this time where I really haven't seen much response, except for maybe a little the first day until I walked home from the bus in the cold, and I think I do keep stirring it up, ooops. I think it's because the dose is simply too low - I was talking to someone who said her 6-yr-old son's 'rescue/emergency' dose (and apparently his asthma is not particularly severe) is 30mg! I will point out - again - that I have seen objective as well as subjective improvement on 40mg -though as I recall it did take a few days. A previous consultant (why do I collect them?) said that when things are stirred up you actually have to hit the inflammation with a relatively high dose and decrease later, since the lower one doesn't properly address the issue and just leaves it to go round and round. This was why he wanted to start with a relatively high dose of inhaled steroids, so I am guessing the same applies to pred.

    Also if your response to pred isn't what it should be and you can't explain it in terms of triggers that are reactivating inflammation, perhaps you may want to figure out the reason for your partial response to pred with your cons?

    Well, I will if he'll listen. I seem to have a lot I need to discuss with him so I hope he is paying attention and doesn't just say 'oh you're doing great' - as I've said, I am pleased at the improvements I've had and of course it's good he notices/comments, but he still needs to pay attention to the areas that need further improvement. I know that my breathing pattern is improving but I don't think it's the whole story, and if I do have an asthma flare-up I need to know how to deal with it and not just leave it to get worse - and pred short courses are probably going to be part of that unless he has any other ideas. If I were just under the GP with normal moderate asthma they would be, and they have confirmed I do have asthma so it seems odd to be so anti-pred - I am glad to avoid it where I can but not where the alternative is worsening symptoms.

    oh and Lou - meant to say yes, can't see other options and I think neither can he. I think he forgot when he suggested increasing montelukast that he'd already suggested it last year as he didn't officially record it (one of the other GPs got rather annoyed that he didn't!)

    Maybe the aliens will have a solution? ;)

  • oh and Lou - meant to say yes, can't see other options and I think neither can he. I think he forgot when he suggested increasing montelukast that he'd already suggested it last year as he didn't officially record it (one of the other GPs got rather annoyed that he didn't!)

    Maybe the aliens will have a solution? ;)

    I get the same with my double seretide. It was first doubled by a GP and she thought that the dose would be dropped back to normal when I saw my specialist, it wasn't. It occaisionally comes up in appointments or I get a phonecall querrying why I have put in a repeat for seretide just 2 weeks after the last. It was put in my notes one day but there are quite a few notes to trawl back through since that happened. They also don't (or can't) put ""take 4 puffs twice a day"" for the pharmacy label/directions (maybe the computer says no (or drop down menu doesn't have that option)).

    How do I get a referal to these aliens? Which department of the NHS do they come under? I'd like to see them ;)

  • All I can advise you Philomela is that if you are having an exacerbation which requires prednisolone to sort out the inflammation then you shouldn't be trying to carry on as normal. Too often people see using nebulisers or prednisolone rescue remedies as carte blanche to just keep going but it must be remembered that these remedies do not work in isolation - rather they should work with your body in restoring health. If you aren't resting then you aren't giving things the chance to work.

    When doing your peak flow the recording to take note of is the best of 3. This is due to the variations we all have when doing peak flows. As has been mentioned before they are not always the best indicators anyway for many people.

    Basically I think what I'm saying is that you need to take a look at your lifestyle I would say and when you are not so well do as little as possible to maximise the effect of any therapies and speed your recovery.

  • Thanks Feejay - all good points! I have been aware that this has not been the most, er, sensible week I have ever had so this weekend I have been trying to dial things down a bit and not go out. Too little, too late perhaps...I should have noticed this before as this time has been a little more intense than I'd been used to for quite a while, particularly today.

    I guess I had just got used to things being good and being able to do much more! If nothing else this will be a good reminder, having to confess to GP tomorrow that possibly I could have helped myself a bit more. Oh well, hopefully will learn for next time.

    Lou - I am not sure about the aliens, sorry ;) If I find them I'll let you know, but you know NHS admin. Actually, admin on another planet might explain some things at the hospital!

  • oops. Numpty/blonde central here. Saw GP this morning, who agreed with me that 25mg of pred was clearly not enough when I described everything including yesterday's Ventolin marathon and coughed at him, so has whacked it up to 40mg (almost went for 50mg, glad he didn't) for as long as it takes to get better and then a bit longer. But he quite rightly pointed out that it would not do very much and he might have to increase the dose again if I didn't give it a chance to work by resting as much as possible this week, not working too much and not rushing around in the cold - and told me no singing! ugggh but I guess that will teach me to ignore some very clear messages from my lungs that they didn't like me trying to carry on exactly as normal.

    I don't know if he heard a wheeze (should have asked, I feel like it would be notable given I so often don't lol!) but given I have been doing this weird wheezy kind of cough a lot and he didn't say 'well it sounds clear' I may actually have been. Which sounds an odd thing to 'want', but it might make things easier if I did wheeze when having issues, given that not all drs are as open-minded about this as my usual GP. (My junior dr housemate informed me at the weekend that the strange-sounding cough included an audible polyphonic wheeze, he could tell a lot about my airways just from across the room and I should 'really go and get some steroids or something'.)

    GP did ask if the hospital had an adviceline or anything or had given me any plan of action, so I told him the situation re no email advice and that it was all down to him for the moment till I see them again - not sure he was thrilled by that since though he is good I got the impression he would have appreciated some specialist guidance from them even if they are busy and can't see me themselves. He said last week he wasn't 100% sure how best to proceed though clearly has come up with a solution - just seemed like he wasn't sure if it was the best one or if he could have done anything else. (I couldn't think of anything else either but then I'm not even a doctor let alone a specialist!)

  • I hope you thanked your housemate nicely for his invaluable advice and asked your GP to skip the steroids and go straight for the 'something' - it could have been chocolate!

  • Ha! I knew there had to be an alternative option. Damn RBH for not considering that one, I shall demand it next time hehe.

    Actually, I was also told by the consultant in my last appt that because of my low Vit D levels I needed more sun. I wonder if I can pull off a hat trick and get them to prescribe a holiday in the sun with chocolate (maybe ice cream)? Happy to share tips/chocolate if I manage it... ;)

  • I think you're on to something there.

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