Pollen count

Hiya all,

Once again facing the a&e dilemma!!

Came off pred after a long spell last sun after having a few great days!!

Really suffer during hay fever season. Yesterday I had a bad(ish) day, but the good old salbutamol was sticking :-) today though really SOB, tight chest, abusing the salbutamol to the point I've got the shakes and heart racing. 10 puffs through a spacer doing nothing!!

I think I'm gonna leave it an hour, don't want another BH hospital visit :-(

Anyone else in the same boat?

Laura xxx

85 Replies

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  • Sooo OOH have sent me in :-( waiting in a&e to be poked and prodded and messed around with

    Feeling very grumpy :-(

  • I hope your lungs are less stroppy now. That shall I, shant I go to A&E is a difficult dilema, one which I have got wrong in the past. Perhaps a trip to OOH at least is needed, with lungs as stroppy as yours it sounds like you need some pred and there's no point in trying to hang on 'til you can see a GP on Tuesday. Have you got an action plan? It helps to know that you shoud get help when you pf goes below a certain point or you're using however many puffs of ventolin an hour or something. It's still sometimes hard to follow a plan, but it does help. Do look after yourself and get to A&E/call 999 if you're using lots of ventolin or fingers/lips go blue or getting tired or can't talk etc. Please get some help soon though.

    PS I am feeling the effects of pollen too, but nothing like you are, just a few hours less sleep in the nights and some mildly achy chest muscles. I hope you're feeling better soon.

  • Sorry, bit of a cross post. I'm glad you're getting some help. Try not to feel too grumpy, I know it's not where you want to be, but it's where youu can get the help you need. Hugs xx

  • waiting in a&e :-(

    I don't want any more pred ... It's the longest I've been off it in ages (a whole week)!

    Flippin stroppy lungs :-(

    I'm not as bad as a lot of people, but I'm feeling really sorry for myself ... Don't want them to admit me ... Is it a bit of a pipe dream?!

    Had to use 3 lots of the emergency 10 puffs and loads more inbetween it's made me all croaky and shaky!!

    Xxx

  • I actually feel like crying ... I've got a ""no wheeze, no asthma attack"" doctor

    Been asked if I'm feeling anxious - no I feel like c**p!! He's ignoring that 3 times today of has been below 200 when it should be 550 (woodwind player).

    Gonna give nebs then review - cant do anything else apparently cos pf currently 300 - doesn't the well into red zone count for anything?!

    Stroppy Laura as well as stroppy lungs!!

    Thanks Lou for being so kind :-) xxx

  • Sorry that your stroppy lungs have caused to end up in A&E. i hope you start to feel better soon.

    The pollens are causing problems for me too.

  • Hiya,

    Just escaped and got home - didn't get kept in though, yay!!

    The ""no wheeze, no attack"" dr was a pain - wouldn't listen, though got worried when pf wouldn't go up before nebs, couldn't talk, was going blue and O2 says down (that's really rare for me!!).

    Anyways ended up having 3 or 4 nebs, can't remember after about 60 puffs of my salbutamol throughout the day. Then they panic that I am really tachy - any wonder?! Lol.

    Sooo I'm home, back on the pred, also prescribed atrovent with the hope of keeping me out of a&e tomorrow, with strict instructions to see my gp tues!!

    I reckon my gp will probably want to refer me now cos currently on seretide 250 2x2 a day, montelukast daily, salbutamol prn, 6th course of pred since feb and now atrovent too and still having attacks :-/

    Had to argue tonight not to give me abs - I know what's triggered it!!

    Lou - I don't have a plan, but did a fair bit as part of my human bio masters and done a lot of research since surdenly getting much worse. Gp had told me tho that 330 is time for pred and 275 is when to start worrying and thinking abou help!!

    Anyways time for bed I think - might be interesting, HR through the roof and given pred at midnight with last neb!!

    Thanks for your support - scariest experience yet!! xxx

  • If you find atrovent works for you, you might find the slow-release version - tiotropium - works as a preventer. My consultant added that in to my mix and it has been amazing, so it's worth mentioning to the GP as they might be able to ring the consultant ahead and get you on it (or something else they recommend).

    Which antihistamines are you taking? I've tried most and am now on one of the old fashioned ones at night, topped up with more of that one or piriton through the day.

    My consultant also has me double up the montelukast during hayfever season / any time I have a runny nose. That has helped too.

    I hope you managed to get *some* sleep!

  • Hi curiouser,

    I am not currently on any antihistamines at the moment - taking over the counter stuff, but not touching it at all. I didn't bet hardly any sleep, was pumping on the ventolin for a lot of the night.

    Feeling better since having the atrovent when picked it up, ventolin sticking now :-) just very tired and have a sore chest!!

    Pharmacist was very good, sleep deprivation and feeling yucky meant I was ready when there. I have got to book a gp appointment tomorrow, where I have to ask about a written plan as currently don't have one, I have got to ask about antihistamines and I have also got to get an emergency course of pred to have in to take if PF goes below 330 - hopefully can then avoid full on attacks like yesterday - it was scary!!

    I didn't realise you could double up on montelukast, I find that it does work for me usually. I have been flaring for a while, lungs are very stroppy at the min.

    I feel as though I should be able to avoid attacks with the amount of meds I'm on!!

    Might stop whining now :-)

    Thankyou xxx

  • Hiya all,

    Once again facing the a&e dilemma!!

    Came off pred after a long spell last sun after having a few great days!!

    Really suffer during hay fever season. Yesterday I had a bad(ish) day, but the good old salbutamol was sticking :-) today though really SOB, tight chest, abusing the salbutamol to the point I've got the shakes and heart racing. 10 puffs through a spacer doing nothing!!

    I think I'm gonna leave it an hour, don't want another BH hospital visit :-(

    Anyone else in the same boat?

    Laura xxx

    O no Laura hope u are ok now ! yes I had a little problem today as well as the pollen level is high to day look some salamol I feel little chest but not to worry about hope u feeling better soon mat :) x

  • Hiya,

    Thank you everyone for being so supportive, feeling a little bit overwhelmed at the minute!! Had less than 8 hours sleep since fri cos of asthma playing up big time and waking me up/keeping me awake/being in hospital. Should have gone back during the night, but didn't because of GP appointment.

    I had a follow up appointment with my GP today after the weekend, where I had a total meltdown. GP was fab though, let me talk through what had happened and was absolutely lovely. He didn't faff with PF and listening to chest etc, said he could hear me really struggling and was happy to go with what I was saying, was actually really nice to feel understood and listened to. He was annoyed at the ""no wheeze, no asthma attack"" comment and very frustrated at the anxiety comments.

    He said that the amount of flare ups (especially this weekend) was worrying, because everything and anything is kicking me off and after I come off pred I have another attack which is worse than the last, its very erratic and dangerous now :-(

    He has referred me for an ""urgent"" appointment with a consultant, which is only 5 weeks away and in the meantime I am on constant pred - 40mg daily with instructions to reduce by 5mg a week (and go up if necessary) but not to go below 10mg before consultant appointment. He has told me I need to ring 999 if I get to a PF of 275. I asked about asthma action plans and his instruction was to go by symptoms as PF is not always reliable and to ring 999 if symptoms bad or PF is 275. Been told exactly what I need to say in A&E.

    My head feels a little scrambled at the moment, because it was good to be taken seriously by my GP, but also a bit of a wake up call :-/

    Sorry for such a long and whingy post - just all over the place at the minute.

    Hope everyone is well :-)

    Laura x

  • Laura, so sorry you are having a rough time of it.

    Sounds like you have one of the really good GPs.

    Your aunt/cousin: your cousin who is a *doctor* wouldn't move them? Oh boy.. It is very frustrating when people don't understand just home much ""silly"" things can make cranky lungs act up. For me, the one people don't get is cigarette smoke: they can take it straight into their lungs without a problem; me? if my lungs are in a bad place, it can cause severe coughing fits even 10m away. They just can't imagine how something that is so innocent for them is so problematic for me.

    Like you too, when lungs are more stable (which usually means higher dose of pred), can stand right next to a smoker with nothing more than a small quiver in my lungs, and sometimes not even that. Strange how reactivity to triggers can go so up and down, but there is it.

    I'm glad it turned out OK for you even with cousinly cluelessness and the pred is keeping things stable..

    I had a follow up appointment with my GP today after the weekend, where I had a total meltdown. GP was fab though, let me talk through what had happened and was absolutely lovely. He didn't faff with PF and listening to chest etc, said he could hear me really struggling and was happy to go with what I was saying, was actually really nice to feel understood and listened to. He was annoyed at the ""no wheeze, no asthma attack"" comment and very frustrated at the anxiety comments.

    He said that the amount of flare ups (especially this weekend) was worrying, because everything and anything is kicking me off and after I come off pred I have another attack which is worse than the last, its very erratic and dangerous now :-(

    I'm in a similar situation : each time pred goes down below 35mg for any length of time, I get one or more serious flares, and each attempt at taper results in a worse flare than the last. GP is similarly worried, but there isn't much to do at this point but watch and see.

  • Glad you've got an action plan and clear instructions of when to call 999. Action plans don't have to go by pf, but can also be symptom based or reliver use based. I hope your wait for cons appointment goes smoothly, do let us know how you get on. xx

  • It felt reassuring to know my gp was taking me seriously to be honest l, felt a bit fobbed off on Sunday night in hosp to start with! Though he said that apparently the ""strongest"" antihistamine he could give me was 10mg citerizine?! Sure it's not - not even touching the sides!!

    I have come back to work today and struggling a bit, but been teaching outside and v symptomatic at night so not getting much sleep. Pred should kick in within a few days though :-)

    Got a question though: what should I expect to happen at this consultant/resp appt? How long should it last? It's 5 weeks today.

    Hope everyone is well :-) xxx

  • It felt reassuring to know my gp was taking me seriously to be honest l, felt a bit fobbed off on Sunday night in hosp to start with! Though he said that apparently the ""strongest"" antihistamine he could give me was 10mg citerizine?! Sure it's not - not even touching the sides!!

    I have come back to work today and struggling a bit, but been teaching outside and v symptomatic at night so not getting much sleep. Pred should kick in within a few days though :-)

    Got a question though: what should I expect to happen at this consultant/resp appt? How long should it last? It's 5 weeks today.

    Hope everyone is well :-) xxx

    As nursefurby says the GP can give you fexofenadine, I tried this.

    I work outdoors too. I was teaching surrounded by trees on saturday, so coughing/chest tightness all day and then had a rubbish night, sunday I was by the coast and although I still woke that night I was generally much better. Take it easy. If you don't already, you could try a scarf over your mouth and or vaseline in you nostrils to lessen intake of pollen.

    At appointment expect to go through your recent asthma stuff, so what symptoms you have, how often, severity, triggers, exacerbations, what you think has triggered them, maybe some pf records, meds. From the initial information gathering they'll then decidde on the best way to move forward.

    Good luck with it all

  • you could ask him if fexofenadine would be helpful, it comes in 120mg and 180mg. Antihistamines tend to affect individuals differently, so what works really well for one person, wont for another - it can be trial and error. :)

  • Glad to know your GP was so good and listened to you - though it does sound like a lot to take in! Crossing fingers you can be a bit more controlled on the pred.

    The length varies depending on where you go. I seem to have had way too many 'first' appts due to moving and being re-referred, and generally find that they'll go through everything as Lou says, listen to chest etc and then usually want bloods and a chest X-ray; I also had an ECG at the first one though at that point it was 'we don't know what's wrong' so if they think it's probably asthma rather than 'anything which causes SOB' they may not do that - suspect they'd still do bloods and X-ray though! And will probably want to arrange full lung function tests - possibly on the day, though this gives you no chance to stop medication, so more likely make an appt for the next week or two. Might possibly do allergy testing, though again you need to have a bit of warning for that esp if you're taking antihistamines.

    Good luck - really hope the appt helps and you're not too bad in between.

  • Hiya, thanks for replying :-)

    Nurse Furby: thanks for advice about the antihistamine. Do you reckon I should give my GP a ring, I don't want to see him to ask him something so ""trivial"" I feel like a real hypochondriac cos I have been there so often recently.

    Lou: thank you for sympathy and sorry that you are also struggling at the minute! Pollen seems to be particularly annoying at the min! What do you teach? I have a primary class, so PE and other teachery things are causing me huge issues at the min! Thanks also for advice re specialist apt - I don't keep a PF diary, do you reckon I should? I am a bit lax and tend to only do it when I feel bad, though I know where my ""best"" is.

    Philomila: my GP was lovely, still so glad he didn't poke and prod me, though was at meltdown point then, because he saw me when I should probably have been in hosp at that moment in time. I am on prednisolone (currently 40mg) for the foreseeable future now, tapering down by 5mg a week, NOT allowed below 10mg though, hopefully it will stabilise me!

    When I have the consultant apt, hopefully I will be well controlled (will be on 15mg then), wont this mean that the cons will doubt it all? I have been told to stick with all the meds I am on etc. I don't want to go through the whole ""anxiety"" thing.

    Pred usually works within a couple of days for me (I started this lot on sun), but I have been really symptomatic today and only getting a couple of hours sleep at night because of asthma aymptoms - how long does/should it take to settle lungs down after a bad flare?

    Take care :-) xxx

  • Had a really good couple of days and tapering on mon. Woke up this am an only needed 2 puffs of the salbutamol to bring pf up :-) so dead happy about that!!

    Only thing is I'm at my aunties and its her birthday - loads of flowers and she won't let me put them out of my way. I won't kick off like last weekend because I'm on pred but more symptoms than the last couple of days and don't want to not be able to taper!!

    Once I get home and away from all the pollen, should it settle so it can stop puffing the ventolin and still taper?

    Laura :-)

  • Only thing is I'm at my aunties and its her birthday - loads of flowers and she won't let me put them out of my way.

    Get out of there! People are so inconsiderate - it's not worth putting up with the symptoms just to indulge them, because you have no way of knowing whether they'll resolve quickly or set off another inflammation spiral, where the inflammation makes you cough which irritates your lungs which makes them make sticky stuff which makes you cough... and on it goes, as you know so well!

  • Cant you just leave if they are upsetting your lungs...? Good to hear you are feeling better

  • She's got dementure, always help out at the wkend to give my uncle a hand, cos her normal carer has the weekend off.

    The person who wouldn't let me move them was her daughter who is a doctor, who didn't stay too long though :-) but would have thought her of all people would understand!! My uncle made me laugh by saying ""why are you panting?!"" Lol.

    Been a bit grouchy today, but ok now :-) didn't kick off today when it would have a couple of days ago, so hoping all is getting better.

    Thanks :-)

  • Hi Beth,

    My gp is really good thanks :-) he is more intested in listening to symptoms etc than that snapshot in time when 99% of the time you're stable when visiting gp!

    My cousin is one of those doctors who don't really believe asthma is a real condition , one of the things she said is 'they never give montelukast to an adult, it never works¡!' Find it works, therefore its not asthma :-/ everytime I have an attack she gives a 1001 reasons that its not asthma - I have learned not to listen and trust my own gp, I don't even telll her when I've had an attack. Sorry, rant!!

    I am in a different situation (anf much less serious!) To you. I have had a lot of short courses of pred in a short space of time, this is why I now have to taper and why I have been referred as I am now on step 5 this is my first referral to a resp consultant (really nervous from reading other peoples hit and miss experiemces!) Though like you each exacerbation is more serious than the last, though never *fingers crossed* ended up in itu.

    I will see how things are tomorrow and if pf is as up and down as it has been today, contact gp before tapering. Might need to ring anyway because antihistamines are not working!!

    Hope you grt sorted beth!! xxx

  • My cousin is one of those doctors who don't really believe asthma is a real condition , one of the things she said is 'they never give montelukast to an adult, it never works¡!' Find it works, therefore its not asthma :-/

    Hmm, what does she think it is then?! This is a new one - even the 'it's all in your head' drs presumably don't think montelukast cures anxiety... I was actually finally given a diagnosis because of montelukast working; my GP said 'basically this ONLY works for asthma and allergies, so if it works, you've got asthma because it doesn't do anything for other conditions.' (No symptoms of 'allergy' kind of things then so that wasn't in the picture.)

    Hope you get some better antihistamines soon and can go ahead with the taper.

  • Philomela, I really don't know what she is thinking of when she says this - Montelukast works well for me. I am a pretty allergicy person; asthma, hay fever, eczema. My uncle is a retired pharmacist and deaf as a post, and he heard me wheezing (panting as he said) yesterday and was concerned - I very rarely wheeze!! She also said that prednisolone is never given for asthma?! I'm glad that she is not my gp!!

    I am going to phone GP tomorrow to ask about antihistamine, but might have to wait til cons appointment. Only 4 weeks away anyway. I don't want GP to think I am being a hypochondriac though, so if asthma still under control might end up leaving it til (hopefully I wont) I have another flare. I feel pretty good today, only needed 2 lots of salbutamol though I'm hayfevery :-) so going to go ahead with taper tomorrow and hope for the best!!

    I hope you are well :-)

  • someonelse may have mentioned but have you tried beconase nasal spray?my daughter was prescribed it to help with her symptoms that are brought on by pollen and is helping.hope you are feeling better soon,

  • someonelse may have mentioned but have you tried beconase nasal spray?my daughter was prescribed it to help with her symptoms that are brought on by pollen and is helping.hope you are feeling better soon,

    Oh that's a good point - I rang the adviceline for some help with the whole hayfever/allergies thing as I was still confused by all the different options and she suggested a nasal spray as well as the tablets. I'm using beconase because I already have one (was prescribed it last summer when GP thought my cough might be post-nasal drip - didn't do anything for what was actually bronchitis!) and it does seem to be helping with the nose stuff.

    However, the AUK nurse said Avamys is the best one and she'd strongly recommend it; she said that beconase gets prescribed because it's cheaper but actually Avamys is much easier to take and also lasts longer - so worth asking about?

    Laura - I am also glad your cousin isn't my GP - she seems to have learned some very odd things! Hope you're doing better and the taper is going ok.

  • I have recently been prescribed Avamys for hay fever. I had it a few years ago for recurrent sinusitis and didn't realise it was also used for hay fever. I have had Flixonase for years but my asthma nurse suggested changing last week as she had heard really good things about it on a course. I really noticed a difference and it cleared my nasal/sinus symptoms within a few days. I also think that it feels better to take and you don't need to sniff as hard! I suppose like all medications different people get on better with different things but I have found a huge difference already (it's just a shame I can't sort out my asthma in the same way).

  • someonelse may have mentioned but have you tried beconase nasal spray?my daughter was prescribed it to help with her symptoms that are brought on by pollen and is helping.hope you are feeling better soon,

    Thanks for that hjr, before Christmas when I had to go to the walk in centre (to be told I had a cold and was anxious despite for once having an audible wheeze) I was advised to buy some beconase, but I must admit I didn't even bother to try it because I knew what is was!! I am tempted to try it if its recommended!! Its not the hay fever which concerns me as much (although it is really annoying) its that it kicks my asthma off, which is a nightmare (as for all asthma sufferers!).

    Oh that's a good point - I rang the adviceline for some help with the whole hayfever/allergies thing as I was still confused by all the different options and she suggested a nasal spray as well as the tablets. I'm using beconase because I already have one (was prescribed it last summer when GP thought my cough might be post-nasal drip - didn't do anything for what was actually bronchitis!) and it does seem to be helping with the nose stuff.

    However, the AUK nurse said Avamys is the best one and she'd strongly recommend it; she said that beconase gets prescribed because it's cheaper but actually Avamys is much easier to take and also lasts longer - so worth asking about?

    Laura - I am also glad your cousin isn't my GP - she seems to have learned some very odd things! Hope you're doing better and the taper is going ok.

    Ahh Philomela, I really hope that it works for you and that you manage to stop it from starting your asthma off!! I have got to put in my repeat prescription for all my meds tomorrow, you can request things online, so I am tempted to ask for it there, that way I don't have to seem like a hypochondriac for having 1001 appointments with the doctor! GP doesn't seem *that* bothered about cost, saying that because he started me on Seretide rather than Fostair, but that might be because QVAR didn't do all that much for me!!

    Out of interest, what else do you take to control yourself and are you under a consultant? I seem to be on a crazy amount of meds already (and reluctant to have any more!!) and have just been referred to a consultant due to the amount of preds, bad exacerbations and increasing frequency of them.

    My cousin does not like medicine. She openly admits to doing it because of ""the pay check"". I never ask her advice now!

    I am still symptomy, but a lot better than last week - I've managed to actually get into work :-) and I have done my first pred taper :-D

    I have recently been prescribed Avamys for hay fever. I had it a few years ago for recurrent sinusitis and didn't realise it was also used for hay fever. I have had Flixonase for years but my asthma nurse suggested changing last week as she had heard really good things about it on a course. I really noticed a difference and it cleared my nasal/sinus symptoms within a few days. I also think that it feels better to take and you don't need to sniff as hard! I suppose like all medications different people get on better with different things but I have found a huge difference already (it's just a shame I can't sort out my asthma in the same way).

    Ooh thanks Kayla :-) I am going to request it from my GP I think :-) I might phone reception rather than request online as normal!! As I said above I really don't want to take any more meds, but if there is even the off chance that it will help the asthma symptoms I will give it a go!

    Its fantastic to hear about good experiences with these :-)

    Thanks soo much for the advice :-) Laura x

  • Thanks Laura! Glad you're feeling better and able to taper - hope you're doing even better now. The hayfever stuff seems to be working for me thankfully - it's so far a lot easier to control than my asthma! Though I suspect already being on the montelukast is probably helping and it's not just the OTC stuff; adding the spray I'd say has helped.

    Out of interest, what else do you take to control yourself and are you under a consultant? I seem to be on a crazy amount of meds already (and reluctant to have any more!!) and have just been referred to a consultant due to the amount of preds, bad exacerbations and increasing frequency of them.

    Defo sounds like you need to be seeing a cons then! I hope it's helpful - writing stuff down beforehand helps.

    haha, like on FB, 'it's complicated'. I've been referred and discharged and re-referred a lot. Currently I'm 'between consultants'; had been seeing one at a place that's supposed to be very good for asthma etc but tbh he doesn't really listen properly and is convinced it's an upper airway problem causing problems and asthma is controlled (and upper airway is really his main thing apparently more than asthma, physio at this hospital and my GP don't agree with this diagnosis) but isn't actually planning to do anything. So after discussing things with my GP, I'm going back to a cons I saw before (hopefully but he should still be there) who actually made a lot more progress with things. I'm not severe or anything, not even been to hospital urgently, just OOH (though apparently I should have gone to A&E a few times according to the AUK nurse's guidelines, but hey I'm still here...). Just weird really hehe, but while I'm open to there being other things contributing (I did have a breathing pattern issue as well which is much better now), I don't think my asthma is as well controlled as current cons thinks it is and I really don't want to have another big flare like I did earlier this year (he doesn't seem to think having flares in the winter is a problem, just part of well-controlled asthma?!)

    I'm on Symbicort 400/12 3 puffs twice a day (current cons wanted me to reduce as he thinks I don't need it but I tried this and my lungs didn't seem to agree with not needing it), montelukast 20mg, Atrovent (seems to work better when symptoms disturb sleep) and Ventolin. It works well some of the time and other times it really doesn't. I get grief for being on so much but if I try to cut any of it out - and I dislike being on so much though it's better than pred - lungs dislike it.

  • Heya,

    Thanks for that Philomela :-) I delayed the taper by a day because of the dodgy weekend and GP agreed that it was right to do. I cannot taper if I am not stable on what I am currently taking. Still having to use my reliever - always a good 2 first thing (at least its down from 4+ and once I *finally* get to sleep asthma not waking me up!) and then when I start because of pollen etc.

    I spoke to GP yesterday, who wasn't willing to change antihistamines/add anything else, so I then spoke to the asthma nurse, who decided I needed an asthma review with her sooner rather than later. The appointment was made today for next week (after she had spoken to GP) where she spoke about the pred and when to taper it/step it up, she didn't say anything about the hayfever, which is my biggest trigger at the min :-( She wants to put together an proper asthma management plan next week, which I hope that if/when I next need A&E makes life much easier during an exacerbation!

    The meds I am currently on are:

    - seretide 250 2x2

    - Montelukast 10mg

    - Atrovent 1-2puffs 3-4 x per day

    - Prednisolone 35mg (upto 40 if necessary and peak flow in yellow/red, but tapering by 5mg per week if stable)

    - Ceterizine 10mg

    - salbutamol PRN

    This seems like a crazy amount of meds!!

    I think I will feel better when I have this review and a proper plan next week as my main concern is professionals not taking me seriously - ""no wheeze, no asthma"". I am hoping that she is going to sort out the hayfever.

    Also, I was going to put in a different post, but will just put it here; what are people's experiences of long term pred? I hate the stuff and the side effects of it, but been told I can only reduce by 5mg a week if stable because the side effect it not being able to breathe, which I get that I need it at the minute, but will the things like ""moon face"" eventually go when I finally come off it?

    Sorry for incoherent ramblings!! Laura x

  • With long term pred, i have finally managed to get off it and onto hydrocortisone. I'm still having frequent short courses but am managing to stop in between now as adrenal glands are supported (it was taking me more than three weeks to taper, and i tend to need pred at least once every three weeks). I have found that even with frequent courses of pred i am loosing weight, and moon face comes and goes, as does insomnia, roughly in time with when the short courses are, so i'm hoping that if at some point I am able to spend reasonalbe stretches off pred then i suspect moon face and weight will go down reasonably well!

    I remember the frustration of long slow pred tapers, i find very little benefit to my asthma below 20mg, and so i would be spending 4 weeks getting side effects with no benefits!

    You were going to see a cons right? looking at your meds, they can still increase ICS dose, which might help you reduce pred, and might be something fairly 'easy' to try (and wont feel like addding too much more in the way of medication). And have they ever tried you on a different antihistamine? some people get on better with fexofenadine, although i prefer citirizine! When you are in hospital have you ever had IV aminophlyinne? I wonder if they'll try you on that? You are on a lot of meds, do you feel any of them dont help you? Even in my early appts, (and obvs even now my asthma is very poorly controlled) they discussed whether any of my meds were unneccessary as they didnt help me. I am currently off uniphylinne, although sadly i suspect i will be back on it soon as i have definately noticed coming off it. I persoanlly want to see what atrovent does for me, GP is discussing whether that would be an option with my cons atm! But yeah - Obvs, im not a doc and dont know your exact circumstances, but just sharing that there are a few more things to try! :-)

  • Hey Soph,

    I haven't had any IVs, not that its not been needed, but because I go into a totally gibbering mess at the mention of it. Have a massive phobia which they seem to understand!! They cant do it if you point blank refuse, which I do when very ill! I suspect that when I am at this point though, (because when I am ok like now on flippin pred and my other meds, I get it and would probably let them do I when I'm like this) that I am very ill and not thinking rationally and that its probably what I really need. Saying that I am not sure how I would react if someone confronted me with an IV at any point :-/

    I have an ""urgent"" cons apt in 4 weeks time. I just want to get off the pred, I can cope with increasing the ICS (if necessary) - would this be through increasing the seretide or another inhaler, cos the max salmaterol is 100mcg?

    My GP will not try any other antihistamine, but I have an asthma review next week, so perhaps they will then!!

    The only medication I don't feel works is the citerozine. I am only on Atrovent because the hosp doctor put me on it until the end of the BH and then my GP decided to keep me on it, but I find I really get on with it, though it tastes FOUL!!

    Soph - this is my first cons appointment, feeling nervous already, but been told he is lovely and will just listen to my history. Is it silly to be nervous?

    Laura x

  • Crossed fingers re asthma nurse and hayfever! I usually seem to get told to double the montelukast - not saying you should as obvs I'm not a dr or anything but given your hayfever is causing problems that might be an option to ask about. The nurse might have to ask the dr about it but it is possible for GPs to do it.

    I do hope you get somewhere with a plan - I am fed up with not having one and everything seems so disorganised, but no-one is willing to sit down and go through things systematically, or if they do they ignore what I say and just tell me I'm on too many meds which is NOT helpful - I don't want to be on this many but I don't want to start cutting things just for the sake of it; only if there's a reasonable chance they don't work for me and with a proper discussion. Every time I talk to the AUK nurses about anything (and I've rung a couple of times recently about various things and had some helpful advice, and it's not always the same one) they comment that I need a proper plan and things need sorting out. One of them told me (in a nice way, not ticking off) that I really do need to take it seriously and I did point out I felt like I was, and that I was trying to do what's recommended in guidelines for asthma of any severity, but it sometimes feels like I just get a bit of a 'well that's how it is' when I don't think it's unreasonable to want a plan etc!

    On that note - what were you told about Atrovent? I do find it helps but I've been told so many different things; AUK nurse recently said no need to be on that and Ventolin - except that I find in some circs, like for night symptoms, it's better as it takes much less of it to calm lungs down and doesn't make me shaky, whereas sometimes I want quick relief so Ventolin is better. So interesting to see you've been told to take it regularly like a preventer it seems - I get so much different info.

    Re the pred - I've never been on it long term (longest is a month) but I do find any side effects seem to stop fairly quickly; with me the most obvious one is sensitive teeth. I think you're right about tapering though - I started tapering last time as soon as it was slightly better, wanted to go faster but GP was more cautious. Symptoms and lower than usual PF ended up lingering for quite a while so in hindsight perhaps I shouldn't have started the taper so quickly.

    EDIT cross-post! Atrovent does taste foul yes, though not as bad as pred... It's totally normal to be nervous though it must help to hear from someone who knows him that the cons is nice; that is the thing that makes me most nervous, that they will be a bad listener, so it will defo help if, as it sounds, you are seeing someone who probably will listen.

  • Hiya,

    I am hoping that the asthma nurse helps to sort out the hay fever, I don't think that I should be flaring still when I am on so many meds. Though have only used my salbutamol twice today and feel pretty good. PF stayed more or less the same, though about 500 not PB. According to my GP though I cant have any more meds added/changed until cons apt, but it may be different after this review, but perhaps doubling up on montelukast would help, cos the montelukast definitely does me good!

    PF and wheezing are not always the best thing for me personally to go by during an exacerbation (I am a woodwind player/top soprano) and rarely wheeze. So I think if I manage to get a proper plan then A&E might recognise my asthma is not ""textbook"". My GP goes by symptoms rather than by PF now.

    Unfortunately I am on pred for the foreseeable future :-( hate the stuff. I flare every time I come off it. I am not allowed to taper any quicker than 5mg a week, and if have any attacks got to go straight upto 40 again and talk to GP, also to go to A&E and tell them what is happening :-/ I wont feel comfortable doing this, so I am hoping it wont be necessary. I think that they are a bit sceptical that I will come much below what I am currently on any time soon :-(

    I was given the atrovent with the view of keeping me out of hospital over the bank holiday, as I think that actually when I was discharged I was still too ill to be sent home. My GP said its ""worth using it up"" but found that its pretty good, its not a quick reliever though and if its immediate relief that's required then to take the salbutamol plus the atrovent. Atrovent is often added to a salbutamol/oxygen neb in hosp (or so I've found!). Though I don't like the taste of it and the atrovent/salbutamol combo makes me very tachy it does help to bring my asthma under control.

    The cons I am seeing is apparently lovely. Its just a new thing to me. All I want is to get my asthma back under control!!

    Take care! x

  • I am rapidly developing a real hatrid of cannulas, however i find that when im really desperate its not so bad, my lungs are too uncomfortable for my brain toprocess it hurting. What I will say is that cannulas really arent that bad (they look like theyd be uncomfortable - but you rarely feel them much once theyre in) dont look when they are being put it, as i personally think it looks freaky, but it doesnt feel like it looks! And personally IV magnesium is my miracle cure, i have a moment usually 10/20 mins after IV magnesium where i suddenly think ""oh my god i can breathe!"" so deffo see if you can convince yourself to let it happen! They can also give IV hydrocortisone which is a pretty quick steroid, so will mean that if you've dropped pred at all then it wont take long for it to kick in!

    Personally when i had my ICS increased, they added a new inhaler, which just contained the steroid component of seretide (fluticasone?? i think!!) so i was taking 4 puffs of the steroid part, but only two of the LABA. As far as i know people dont tend to be on higher ICS than that (although feel free to correct me if i'm wrong - i've just never heard of it! this board would be the place to find that person though!!)

    Possibly if you feel the cetirizine is not helping then something like fexofenadine might be a good thing to try, some people react much better to one than the other, i need 180mg of fexofenadine to manage, although GP is looking at putting me on multiple antihistamines as something else to try! DOes GP have a reason for not wanting to try another antihistamine?

    Atrovent tastes evil, but i personally respond really well to it in hospital, and i find it keeps me going much longer than salbutamol, salb makes me very tachy, and im naturally tachy anyway so if im only just starting to go downhill in hosp, they try to get in fast with the atrovent which often will sort me out!

    As regard to the cons appt, try not to worry, especially if you've heard they are nice! Dont forget, when you read bad stuff on here you are getting a disproportional representation - people rarely talk about a cons who is good at their job unless they are particularily spectacular, but will happily moan about the bad ones! Go prepared, have things like a peak flow diary,knowledge of your personal best and your inhaler usage and symptoms. I got asked detailed questions about what attacks were like (how quick, symptoms, the order symptoms start etc) and they are likely to just order a load of tests, LuFu, Pulmonary function, reversibility spiro, methacholine, exhaled nitric oxide, that type of thing as well as all your igE type blood tests. Oh and sometimes CT scans etc. All these are basically to check nothing else is going on in your lungs. And I personally had no medication changes after the first appt (frustrating, but these things do take time) and meds changes came into play at the second appt, and we are reviewing how that went in a month or so. Try not to get your hopes up that he will come up with some miracle cure quickly, but getting started in the right direction is very important! I really hope things get sorted out for you and you can get off pred. My advice would be that if possible you should take someone with you I (and others i have spoken to) often feel upset when things aren't going ""my way"" in appts, that might be just because these things take time, but i have a tendancy to stop talking and listening and retreat into myself when i dont want to cry - someone there as back up can make things feel a lot easier and its someone to help you remember what you want to say and to remember what the cons says. A list of your questions might help, my cons was reluctant to say anything at the first appt, wouldnt talk about potential timescales or treatment ideas, which i understand, but did leave me feeling a bit bewildered, i like a plan! thats my thing!

    Let us know how it goes though :-)

  • Ahh thanks soph, as usual you're an awesome mine of info :-) I am apparently awful when I get to ""very ill"" and I know I threaten to discharge myself etc when they start to brandish canulas etc. thing is when I'm ok (like today - had my best day breathing wise in months!! Knew I felt good so checked my pf was 530, pb is 550 :-) so went on a long walk with my friend and the dogs, so feeling much happier now :-) though lungs are a little grumpy cos of the pollen, but nothing that can't be sorted!!) I totally get why I need to be treated in a certain way like IVs etc and I'd get better a lot quicker if I did. Perhaps asthma review next week will help because I am hoping that in my management plan they will state exactly what needs to happen in an emergency - need to sort out the ""no wheeze"" comments!!

    Thanks for you advice about cons, I hope it goes well. Strangely increasing ics doesn't bother me as much as being on long term pred!! I need to get off it, but they won't let me taper any quicker, but there are definite reasons for needing it!!

    I don't know why gp is so reluctant to try other antihistamines tbh, will see what nurse/cons says!!

    I find atrovent works well for me too. I tend to use is as a preventer if I'm going to do something I know will start me off and obviously the salbutamol when necessary too. I get very tachy on salbutamol - over 160 the other week!!

    Are you any better now? Did you get a gp appt? Sounds like annoyingly your lungs like pred as much as mine :-(

    Take care! X

  • Just wanted to chip in to say that my consultant is lovely and very good.

    Also - after 2 years of horrendous pollen-related symptoms, I'm getting away with it very lightly this year despite the pollen levels.

    I'm now on Spiriva (which is long-acting atrovent) as well as Montelukast and HydroxyzineHCL and Seretide and and and... and of course on hydrocortisone permanently as my adrenal glands and pituitary have both given up on that side of things.

    So - the key message is that there may be light at the end of the tunnel. I honestly never imagined I'd get through a tree pollen season without being admitted... but it looks like I will - walked the dog with no problems at all earlier. Haven't used my nebuliser in about 3 weeks!

    I hope the asthma review goes well.

    It's a shame you have such an issue with IVs - that must be really difficult. I'm totally fine with IV stuff (I'm learning to do my own cannulas at the moment!) but there are other seemingly innocuous medical procedures that really, really freak me out, so I can sympathise indirectly.

    Good luck!

  • ^^ thats promising... :) wish it worked for me. Two steroid inhalers, one with long acting bronchodilator, plus spiriva, double dose monteleukast and high dose fexofenadine. And a nebuliser before I go out. I sometimes wonder why I bother since none of them keep me walking in the summer, have now had to resort to a scooter or I will be housebound for three months like last year. Grass pollen isnt high yet, though its on the radar, and it took me 45minutes to walk a mile this morning. I used to be able to walk four miles in an hour.. but hey at least the dog was happy, she rolled in sheep poo - liberally!! Little sod...

    How are you getting along with the cannulation, have you progressed to a venflon yet?

  • How are you getting along with the cannulation, have you progressed to a venflon yet?

    Gone up to a 21G needle for venipuncture now, so starting with the 20G (pink) cannulas next week. I've got some venflons and some cheaper ones to see if I notice the difference (the nurses were complaining about the cheap generic ones in A&E last time I was there).

    I can do either arm right or left handed now, with about an 80% first-time-success rate which feels like a small miracle given how much I shake!

    Sorry you're still suffering - sadly I'm sure there just won't be a solution for everyone, I think I've been adrenally seriously compromised for a long time (possibly since childhood) so I think that and the tiotropium have made the biggest difference to me.

    Cx

  • Ahh curiouser, that's a pain that adrenal and pirtuitary gland with natural steroids!! Is that because of high doses for such a longtime? I'm on long term oral steroids and combo of other stuff, which is keeping me more stable and it of hospital!! How long did it take them to get you on the right meds? What is spriva? Never heard of it!!!

    I have mega issues with IVs and any injections, I'm assuming that's how hydrocortisone is given? I have a genuine reason, but when v ill I'd imagine I'd have to be in resp arrest or something, ridiculous I know :-/

    Well done for being ok this year with pollen :-) you must be really happy!! I have a lot of triggers but because I've been flaring for a few months seem very sensitive!!

    I have had a really good day today, better than in literally months!! Managed a pf of 530 (pb550) and felt awesome!! As a result ""made the most of it"" and been her active outside!! Suffering a bit now cos at 400 but that's around where I've been lingering recently and can't complain cos of what I've done today!! It's definitely because of pollen cos have all the other hayfever symptoms.

    Nursefurby *hugs* sounds awful :-( do you ever have good patches? My asthma is not great, but deffo not that bad!! Is allergens the worse trigger? Any other options? Oh and my dogs love to roll in smelly things too!! Thanks for your advice :-)

    Laura x

  • Ahh curiouser, that's a pain that adrenal and pirtuitary gland with natural steroids!! Is that because of high doses for such a longtime?

    We're not sure - but I certainly haven't been on pred much at all, and actually most of the symptoms precede me using pred over the last couple of years (and I've only had a handful of short courses really). I had injections of a steroid called Kenalog when I was at Uni, which is pretty strong and considered quite risky these days. But I also had growth hormone deficiency as a child so it may be that my pituitary was busted from the start - I have a 'unique' pituitary MRI according to my endo. So - could be a combination of things. They haven't ruled out auto-immune addisons along side pituitary failure yet - it might be that I 'got lucky' and scored both!

    How long did it take them to get you on the right meds? What is spriva? Never heard of it!!!

    My meds have been increasing steadily over about 2 years, and I only started on Spiriva (Tiotropium) in Feb, and it made a huge difference within a few days and then carried on improving things for at least the first month. It's a slow-acting drug in the same family as Atrovent, so I think that means that it works on smaller airways than the salbutamol / formeterol family.

    I have mega issues with IVs and any injections, I'm assuming that's how hydrocortisone is given? I have a genuine reason, but when v ill I'd imagine I'd have to be in resp arrest or something, ridiculous I know :-/

    In an emergency I have to be injected with HC, but daily I take it orally. If you need it on board quickly then it has to be given by vein. In an adrenal crisis your circulation and your digestion both shut down so oral meds and muscle injections don't get it into your system. Would you feel better injecting yourself than having someone else do it? Just a question - that might be even worse!

    Well done for being ok this year with pollen :-) you must be really happy!!

    It's pretty amazing. I do have hayfever - my voice is gone and my nose and eyes are itchy, but compared to the last couple of years when I've been totally unable to even go outside or speak in sentences for weeks on end, it's really light. That said... we are going down to London tomorrow for 2 days, which I'm a bit nervous about. We live in the middle of the Yorkshire Dales and there are pretty much no trees, and it's tree pollen I'm allergic to, so I may have spoken too soon! (Packing the nebuliser now... )

    I have a lot of triggers but because I've been flaring for a few months seem very sensitive!!

    Up until I got on hydrocortisone to sort my lack of cortisol out, I was allergic to absolutely everything. I can still only eat about 40 things - and those are 40 raw ingredients - vegetables, eggs, rice and not much else. I was flaring every single time I ate as well because my lungs react really strongly to citric acid, which is produced as a gas when we digest things. I'm on domperidone and omeprazole now to help with that but I still can't eat high protein, high fat or anything containing acids.

    But I have found that now I've broken the cycle of the sticky cough, any flares that do happen calm back down again really quickly compared to before.

    I have had a really good day today, better than in literally months!! Managed a pf of 530 (pb550) and felt awesome!! As a result ""made the most of it"" and been her active outside!! Suffering a bit now cos at 400 but that's around where I've been lingering recently and can't complain cos of what I've done today!! It's definitely because of pollen cos have all the other hayfever symptoms.

    Nice one! That's great news :) Not that you've dropped to 400, but the 530 is ace!

    Cx

  • Laura it was awful, she has been shampooed and now smells like blueberry muffin LOL - or did you mean the windbags? ;-p I don't really do good patches, just crap or very crap. Summer is terrible cos of heat and pollen, I ended up on 30mg oral press daily for 5 months last summer on top of all other meds and was still having attacks and unable to walk or shower. Winter is crap cos of the cold and damp. April isn't too bad hahaaa ;) three cheers for April! If I could live in an Escher picture and all life was downhill it would be handy.... Lol

    Fab that you've had a good day today, long may it last!! x

  • On my way home from hospital today I went to the pharmacy to pick up meds and I asked the pharmacist for asthma advice abou pollen allergies. As a professional pharmacist, when asked 'what should I say to my gp for add-ons?' The answer I got was 'oh, you don't need to go to the doctors, just rub Vaseline up your nose'..

    Really?!?

    P.s.talking of dogs, today my poor dog blue has been diagnosed with asthma and is hypo-allergic. A walk to the field kills both of us!

  • Actually the pharmacist had a point ;) there is a more expensive thing on the market called haymax but Vaseline is cheaper! It works by trapping the pollen particles before you breathe them in where they can cause an allergic response. It's extremely effective for many people - no good at all for me as I'm a mouth breather.

    Really sorry to hear about your dog :( x

  • Really?! Wow, I thought she was nuts!

    And on the bright side, me and him are both in the same boat now xD

    My peak flow is back down to 220 and my lungs are playing up, so looks like another long night :(

    Oh and Laura, it must be hard having a phobia of something used so commonly. As far as I know, I'm fine with most hospital procedures thank god, but my boyfriend can't look at a needle without going weak (what a wuss!!) Anyway, good luck with future medical procedures x

  • hahaha my dancing teacher said her husband keels over EVERY time he has to give blood, ohh and my big strong male friend also keeled over when he donated blood. He was being all cocky saying ""i'll be fine, i'm bigger than you must have loads of blood to spare"" and he went down - i've done it loads of times and been absolutely fine!

  • I am ridiculously phobic of all injections etc :-/ ironically I was fine with injecting by type1 diabetic ex when he was hyper!! I'm hoping that the nurse will put onto my plan that I need IVs when necessary on my plan, I will agree to it when well but not when ill!! I've never had a management plan before, but in my surgerys words I'm a ""serious"" case at the min - not that bad I'm sure :-) also want some explanation there that in not always ""typical"" because I don't always wheeze and I can deteriorate very quickly!!

    I've had a couple of awesome days, not topped 500 today, but a huge improvement :-) the citerizine is definitely not working though, hayfever is horrendous, thought the pollen count was coming down!! And in for an interesting 24 hours as just walked into the florists that is my aunties :-/ though my 35mg pred should keep a bad attack at bay!!

    Curiouser, I hope you're on in London!! Stay away from the park!! Have you got one of those battery powered nebs so you can use when out? Just look after yourself and listen to your lungs!! Have fun :-)

    Nursefurby your dog sounds as delightful as my little monsters, they love fox poo and cos pats - disgusting creatures, I love em to bits :-)

    Annie, an asthmatic dog?! Never heard of that one!! Poor dog!! Stay out of them fields!!

    I NEED to get a grip with the IV issue, mega wuss!! I am sure I'd recover a lot quicker if I'd let them do it :-/

    Laura :-)

  • Heya,

    Just out of interest, does any one flare whilst on Pred?! Had a really good couple of days but been around loads of flowers etc etc today, used my reliever a few times and been fine but now SOB and coughing loads etc, PF about 70% (though not always a good indicator of how ill I am). I don't need urgent care etc, but concerned that I have used about 8 puffs this eve.

    I don't need A&E or OOH, but the fact I am having an attack and on a pred taper (35 going to 30 on mon) is slightly concerning.

    Does anyone else ever have mild-moderate attacks when on this level of pred? I have been exposed to a heck of a lot of triggers today, so its no surprise I am being effected, just assumed the pred taper (I am bad when I stop it suddenly, and on maintenance preds so only reducing by 5mg per week) would prevent this sort of thing!

    Random post ... just know I am in for a rough night :-(

    Laura x

  • Hi Laura, I've been known to have a severe attack requiring several nebulisers on that level of pred. Happens in the summer (pollen) with too much movement/activity.

    I hope your night isn't as bad as you were thinking... x

  • Hi Laura,

    I had a flare in February/March and had a really tricky few days - the worst - on 25mg of pred - saw GP next day and he promptly whacked it up to 40 and was considering 50. It took a week to feel slightly better - still very 'flare=y' and ages to feel properly better; after reading various posts here I suspect I may have come off too soon; I was telling my GP I felt 'much better' when I was only better compared to the low point of 30+ puffs in a day and probably should have been on pred longer and not tried to get back to normal as soon.

    The GP told me that pred doesn't get a chance to work properly if you keep inflaming the lungs. In my case that was rushing around in the cold so he told me to stay at home and rest, but if you've been around a lot of potent triggers like flowers that could equally apply - it's not strong enough to deal with a direct assault I don't think though it should make things a bit less twitchy.

    Perhaps you should pause the taper? Even if you don't go to OOH etc, a GP appt asap would seem like a good idea to discuss this. I seem to remember he wasn't keen on your having these attacks when dropping pred so he will want to know asap I'd think.

    Hope you feel better soon!

  • Thanks Lynda,

    2 puffs of salbutamol is working for about 45 mins then struggling again or not really sorting it. I don't need emergency treatment, but I am not great this evening. It is definitely pollen that is doing me. My GP has told me if PF drops to 50%/10 puffs per 20 mins not relieving symptoms I need 999. I am certainly not that bad, my PF is between 300 and 350, 50% is 275 for me. Salbutamol is bringing it up for a short while. Though apparently at 330 I need pred - doh already on it!

    I have been exposed to a heck of a lot of triggers today. so not surprising really, I just thought the pred would stop any attacks and want to taper to 30mg on mon. I will see how things are tomorrow, but perhaps talk to GP/nurse before taking Mondays dose if still dodgy to see what I should take, if bad tomorrow will go to OOH as will have spent 24 hours in the yellow zone. I don't have a written management plan, but GP has told me what to do and when.

    I don't think my asthma is nearly as severe as yours Lynda having read other posts of yours, my lungs are just throwing a hissy fit this eve and need to learn how to behave!! Hopefully the cons will give em a kick up the ass!

    Exhausted, trying to lie down to sleep but they aren't complying, flippin things!!

    Laura x

  • Thanks Lynda,

    2 puffs of salbutamol is working for about 45 mins then struggling again or not really sorting it. I don't need emergency treatment, but I am not great this evening. It is definitely pollen that is doing me. My GP has told me if PF drops to 50%/10 puffs per 20 mins not relieving symptoms I need 999. I am certainly not that bad, my PF is between 300 and 350, 50% is 275 for me. Salbutamol is bringing it up for a short while. Though apparently at 330 I need pred - doh already on it!

    I have been exposed to a heck of a lot of triggers today. so not surprising really, I just thought the pred would stop any attacks and want to taper to 30mg on mon. I will see how things are tomorrow, but perhaps talk to GP/nurse before taking Mondays dose if still dodgy to see what I should take, if bad tomorrow will go to OOH as will have spent 24 hours in the yellow zone. I don't have a written management plan, but GP has told me what to do and when.

    I don't think my asthma is nearly as severe as yours Lynda having read other posts of yours, my lungs are just throwing a hissy fit this eve and need to learn how to behave!! Hopefully the cons will give em a kick up the ass!

    Exhausted, trying to lie down to sleep but they aren't complying, flippin things!!

    Laura x

    I think we're much the same. If I need 10 puffs every 20 mins and done that 3 times in an hour and pf below 50% then I have to go for nebs and up steroids. Sometimes I've flared like this on pred already, at new year I had to up from 40 to 60 when I was like this. My best is also 550 and I know that at 300 I don't really want to do much except hang out on the sofa, 350's not too bad but still shouldn't be doing much or risking coming across triggers if you can avoid it.

    For lots of people pred will make lungs really good, but as you can see by the replies, some of us have had pred and still get symptoms, although less severe than without the pred.

    It's hard to get your head around having so many symptoms when on a bunch of drugs that should be preventing these symtoms/attacks. I feel like I have quite a few preventative meds and it doesn't make sense to me that I'm woken up coughing half my nights and have symptoms every day. It's something that we have to manage as best we can, look after ourselves when we're poorly and make the most of our better times. xx

  • Thanks Philomela,

    I will see how things are tomorrow, but I have been exposed to a lot of triggers today. So bound to be playing up somewhat!

    You're right, my GP wants me to have *no* attacks, but with the way my asthma is at the min, I don't feel that no use of reliever is at all possible, but hay ho, that's why he has referred me to a cons!

    I am meant to be tapering to 30 on mon, but will probably take 35 and chat to him. I have an asthma review on weds anyway, so can talk these flares up here. If I am ill tomorrow I will go to OOH.

    My GP told me to totally avoid triggers like pollen etc, but as a science/primary teacher this is not possible. I did have my best day in about 6 months though on Thursday, so should be grateful :-)

    Thanks for support :-) x

  • Hi Laura,

    I hope things are a bit better for you today. I have also had multiple flares when on pred, especially during a taper and this time of year with pollen. The advice to avoid pollen is tricky to follow though isn't it? I have just been to get some work out of my car and can feel my throat itching already! I dread it when my class all decide to use the outdoor area and to make it worse the teacher in the next class has just put guinea pigs in there! I'm back at work tomorrow and it should be sports day so am stocking up the meds tomtake. I'm seeing the asthma nurse next week to discuss my consultants advice as they talked over the phone on Friday. It sounds as though they think hayfever is a major trigger and so will be focusing on treating that as a way to avoid asthma symptoms. I hope it works!

    Sorry I can't offer much else. It's so frustrating when you have been well and then have a flare up again.

    Take care

  • Thanks Kayla and Lou,

    Its nice to know that I am not the only person who still has flare ups on pred, but obviously not happy that other people feel c****y with their asthma!!

    I have never been as bad with mine as I have over the last year and I must admit that it is driving my up the wall at the moment!! Yesterday was rubbish and I fought off calling for help last night, but controlled it at home, managed to get some sleep last night though eventually!! My GP/asthma nurse is going to be pretty annoyed at my review next week when I say this. Not been as bad today, though PF is lingering around 350, 400 with the salb/atrovent combo! Though decided to take the dogs for a walk and living in the middle of the countryside, there are a lot of trees so suffering now!! Grrr.

    I really feel that on these levels of preventative meds plus the pred I should have no asthma symptoms at all!!

    I am not sure what to do about pred taper tomorrow. I like to take is as soon as I wake to try and avoid it keeping me awake. I don't think that I should taper while being symptomatic and suspect the GP will agree. Should I take the 35 when I wake and then try to talk to GP/nurse when surgery opens, take 30 and then another 5 later after talking to them or just take 35, see how I am on tues before tapering (obviously if better tomorrow) and then wait to discuss during my review later in the week? Tricky trying to do the right thing, I don't want to annoy them by trying to second guess, but also I don't want them to think that I am being a hypochondriac either!!

    I did have a couple of days where I was really well last week and then spent a couple of days surrounded by a ton of triggers, so not surprising.

    Lou: are you on maintenance preds then? That's what I am currently working towards, GP wants me stable on 10mg by my cons appointment. Its must be annoying for you also being on such high meds, yet still get both day and night symptoms!! If you're on maintenance preds, do you often find you flare, need treatment and end up going back up again and having to start tapering again? I just want to get off the pred lol!!

    Kayla: I don't get the ""avoid pollen"" advice ... I am teaching PE out on the field tomorrow :-/ work are a bit touchy when I say asthma is playing up ... inhalers will be at hand!! I am sure that you understand this though!! Little monkeys going to the outdoor areas!!

    Cheers :-) x

  • I 'm not on maintainance pred and feel lucky not to be. I spent most of September to January on Pred and did flare quite often and had a few attacks where I ended up going for nebs when on pred. I know the feeling of wanting to get off pred. At times when tapering I've had to go back up before tapering again, it feels like such a setback when going back up again and having to extend the length of time on pred, but it has to be done sometimes. Others will be much better placed than I to talk about flares when on maintainance preds.

    Good luck in getting stable a getting off the dreaded preds.

  • I really do not seem to have any tolerance for pollen, what so ever. Every time the sun comes out and the pollen count goes up I struggle, the pattern for the last few months (although there is other allergies/illnesses and other factors which also make it worse) has been that every time there is a nice day I have a really bad attack, which does initially appear to get better with salbutamol etc, but after a couple of days I just totally and suddenly crash. Other times I just go into a severe attack. I have been in hospital with it 4 times in the last 3 weeks due to asthma, never been in for anything else. Just feeling frustrated, my asthma has never been so out of control.

    Today, I have maxed out on my symbicort SMART (400/12 2 puffs twice a day plus upto 2x2 extra) with the exception of taking my night-time maintenance dose, plus regularly using salbutamol and maxing out on atrovent. I am not in any danger as my PF is lingering around 55%. I am just feeling frustrated as I am on SO much medication I really feel as though I should be controlled - even to the point I am doing a slow taper to a maintenance of 20mg pred (currently on 35mg and there til next Monday (a week tomorrow!)).

    I don't at the minute need to call for help, my consultant has said 50% is 999 being ""severe, brittle"" and living about 20 miles from my nearest hospital, I seem to go downhill so quickly, but then also can be really struggling for a few days and then have a really sudden attack, don't want to get to this point either.

    Just having a rant and feel sorry for myself, fed up of the ""nice day"" pattern :-(

    Anyone else suffering today?

    Laura x

  • Ahh Laura, that is rubbish that you can't enjoy a nice day without your lungs acting up :( Does your cons have any idea how to control that side of things? At least when cold air sets me off I don't want to be outside anyway. Would a stronger antihistamine help? I really hope you can break the pattern this time and not crash/end up in hosp.

    I've been struggling a little today but I don't *think* it's the pollen - can't work out what's happening with the hayfever but it doesn't seem to be as troublesome as it was a few weeks ago which is good if a little odd - not complaining though.

    I think the incense this morning set me off, but I must have been struggling already as while it does affect me usually, it won't have that much of an effect unless I was already having issues. It's not too bad but I am really confused about what my lungs are up to atm! Seem to have an ongoing mild sore throat/sometimes mucusy chest but no cold -odd.

  • Yep pollen setting me off this weekend. Glued to the sofa today.

    Hope you pick up a bit and avoid A&E.

  • You were saying yesterday that your lungs are a bit stroppy at the min. Do you think that it could be something to do with nerves/stress because of the PhD interview? I know I hate it when my asthma is put down to anxiety, but I also know that stress makes my asthma worse. Just a thought? Do you reckon you should go see your gp tomorrow?

    My asthma is driving me mad at the moment. It does not seem to be able to be controlled, though I do respond to treatment. Whenever (though obviously things are now different) I stop the pred it gets very dicey. I am getting to the point of an attack where I get very stubborn now, I am determined that I will not end up needing help this evening, though I haven't dropped below 55%, so am ok at the min, just getting very tired and grouchy - damn lungs

    My lungs also feel ""itchy"" which I have noticed seems to happen when I am having an allergy related attack.

    My cons seems to think that the montelukast will help the hayfever too, I forgot to ask about stronger antihistamines tbh, by that point my head was scrambled with the brittle diagnosis.

    I haven't felt sick today with the Symbicort, so hoping that yesterday was a one off :-)

    Philomela, incense always sets me off, I have stopped going to church recently because I know that I will have an attack in the middle of the service, but I want to get back to the choir, though I doubt that I could do the descant line at the min.

    Thank you both Philomela and Spookymilo, I am also hoping I avoid A&E - no intention of going anywhere near the place.

    I am rambling now...

    Laura x

  • Do you also find that you don't realise how bad you were until you start feeling a bit better? I had that last night- thought I was ok but once I'd had a few puffs of ventolin realised how bad my breathing had been. Not sure how I'm going to manage at school tomorrow - are you planning on going in? Getting tight if I talk too much at the mo so a full day teaching including an Obs should be fun!

  • I am going to see how things are in the morning, I have had a chat with my line manager this eve, between coughing and not being able to talk to prepare him for me possibly not being in tomorrow. Either way, I am not going to be in first thing in the morning, because I think I need to arrange to see my GP tomorrow.

    It always surprises me post attack how bad I felt at the time and how stupid I was for not getting help and being stubborn. 10 puffs of my salb has brought me to 70% so while very stroppy I *think* I'll avoid hospital. I also do not want to have my pred increased, so I don't *think* there is much that can be done lol.

    Are you going in tomorrow? If you are good luck with your obs! Are you feeling any better?

  • hehe I am not in a position to criticise rambling...

    :( re your lungs - naughty step time definitely! I was wondering about the montelukast - could you increase it? There's not that far to go but I'm on 20mg; it might help with the allergy side of things for you if you had more perhaps - ask cons? Also wondering if your cons would consider Xolair at some point given you have such a strong allergic component? Really hoping you don't need to go anywhere near A&E!

    Glad to hear you haven't been feeling sick with the Symbicort again - that would be horrible!

    My lungs have been grumbling at a low level for a while now - I thought I had a cold but no. I keep thinking they're either going to get better or worse but just seem up and down every day grrr! I see what you mean about stress but atm I am oddly laid back about the interview! And I don't think stress is a trigger for me anyway though I know it can be without being 'just' anxiety - I had a horrendous situation with one of my housemates a couple of weeks ago (things brewing and came to a head and all sorts of things associated with it) and my lungs were behaving the best they've been for ages! So luckily it would appear that stress does not affect my lungs/breathing.

    I guess I could see the GP but can't work out whether it's got to that point yet as it keeps being up and down...this is why I need a plan!

    EDIT Spookymilo - good luck tomorrow and hope you feel better! Work is no fun with stupid lungs; I also find it makes my brain fuzzy and the lack of sleep doesn't help.

  • Will almost certainly go in because I hate calling in sick and always think I'm fine, even if I get sent home again the second the head sees me! Hopefully will manage the obs as it's a supportive one and I'm really looking forward to my lessons for this week.

    Not feeling too bad when sitting still doing nothing - tight and sore but ok. Was bad between 10.30 and 4.30 last night so not looking forward to trying lying down but my legs get too cramped on the sofa.

  • Lungs definitely need the naughty step ... driving me mad ... salb working for annoyingly short time, though not dropping to 50%, so *hoping* they stay that way!

    I think I am going to ask my gp about upping the montelukast. I just cant help thinking that I really really should not be getting any asthma issues at all with the level of meds I am on! It is ridiculous! I obviously asked a lot of questions about brittle asthma, but I just cant get my head around how I can be really struggling on all these meds!! Is it only the cons who could up the montelukast, or could the GP? I don't think there is much further I can go really meds wise, and really don't want to up the pred. At 35mg I get NO side effects, so though I don't like it I cant really complain much. Cons mentioned Xolair, but it depends on just how allergic I am from his blood tests etc.

    Its good to know that stress doesn't effect you too much, I get more symptoms when stressed, but then know whats causing them :-)

    Spookymilo, I also hate calling in sick!! Tomorrow morning I am teaching outdoor PE followed by diffusion in Science (aerosol spraying), but don't have an obs! Its driving me up the wall. According to my line manager tonight, he has to do a ""risk assessment"" on me when I get in after GP apt, but then think that's also due to the new diagnosis.

    I am hoping that I stay out of A&E too. Want to hold out til at least tomorrow when I can see my GP.

    Laura x

  • GP should be able to - mine did! Though he forgot he had and told me to again when I had a flare-up earlier this year; came in to see him and said 'er, think 30mg probably going too far, maybe pred instead?'

    Hope you can hold out for GP Laura though don't try TOO hard! I am reluctantly beginning to wonder if I shouldn't actually make an appt for this week - prob is the only thing he can do is give me pred and it makes me stupid/fuzz-brained - not ideal for an interview really.

    Spookymilo - meant to say definitely, I only notice how bad I was when I'm not like that anymore.

  • The pollen OFFICIALLY sucks this weekend. I'm on 2 puffs lasting me about an hour. Only dropping to 70%, so no panic, but to get to anything green-zone-ish needs a lot of salbutamol.

    So - Lollie, hopefully this will be the absolute worstest of worst weekends of pollen, and from here it'll get better. We're oop north and our apple tree blossomed today, and it's usually last of the trees to go. Though of course there's always grass pollen to come... but it depends which ones bother you.

    Good luck!

    Btw - I bought a box of FP3 masks on amazon - you can pick them up in DIY stores too. Pollen and mould proof.

  • Ah ok, that's an option then, I'll try to make it seem as though its his idea though!! I really don't want to go back up on the pred at 35mg I don't get horrid side effects, but at 40 I do. I don't seem to tolerate any allergic responses at all at the min.

    If I drop to 50% PB tonight I will call 999, cos meds not doing much :-(so wont try too hard lol. I really really hope I can stay at home, stubbornness kicking in!! But also a bit concerned that I *could* dip really quickly. Pred brain sucks - HATE the stuff.

    Curiouser - I live in the middle of the peaks, LOADS of pollen and old house (400 years old) too, lungs just cant cope. Green zone has been impossible for the last (at least) 48 hours!. anything below 70% apparently I need pred, but already on it! My cons last week was awesome, but just don't see where I can go from here. Its frustrating enough, but with the brittle diagnosis I feel as though I am constantly watching and waiting for that ""life threatening attack"" although I have been there and done that. Although, by this point I would have probably called 111. Shall I wander around (when lungs let me get off the sofa :-() with a face mask on?! My kids would find it hilarious :-)

    Laura x

  • So sorry that you are struggling at the moment Laura, here's hoping that you do not end up at hospital.

    The pollens have been causing loads of problems for me and these days it doesn't take much for my lungs to start objecting.

  • Sorry to hear everyone is struggling - the pollen has really set me off today. I have been keeping detailed records of inhaler use (symptoms, time, pf, dosage) on my phone this week to show me GP tomorrow (part of my ongoing mission to show this is a flare and not just me getting stressed). As it has been half term, I have had a few days inside writing reports and a few days outside too. I have found a huge difference on days I have been outside (much more reliever needed at more regular intervals, a phlegmy cough rather than a dry one, some wheezing and waking up more in night. Today I have taken 18 puffs of Bricanyl (lasting little over 2 hours) and pf down to 220 (50% of recent pb). I'm just running a really hot bath so I can sit in the bathroom and try to clear my sinus (I have minor nerve damage on one side of my face so it starts tingling when they are blocked). think I am in for another long night but I'm not sure what my GP can do though as I'm already on strong antihistamines (after trying a few), a nasal spray which did work to start with, eyedrops, monteleukast and Piriton if things get really bad (this is really prescribed for my insect bite and nut allergy before using an epipen but it is good for hayfever too). I'm also too allergic for Xolair. Let's hope the pollen count goes down soon.

    Luckily I have a training day tomorrow which I have already covered in twilight sessions (so many teachers at my school are part time there are only 3 of us who have to do them all and so are encouraged to sort our own twilights out during the year). I hope everyone teaching tomorrow makes it to work but do be careful!

    Take care

  • I am hoping to try and get off to sleep, like, now!!

    I have as recently as last week been diagnosed with having severe and brittle (Aspects of both type 1 and 2) asthma, though the asthma was a given before then. Before then I would have been debating whether I need help at this moment in time, with the new diagnosis, I feel as though I am being obsessive. I do not want to end up in hospital, but then also do not want to end up in a dangerous situation either.

    I feel now as though I have a million and one questions for my consultant, I am aware that I am not able to have many more meds changes. My cons is talking about a few potential changes.

    My cons was great, but I am really struggling to get my head around the brittle diagnosis, which I am sure is being made much worse by my lungs being a pain tonight : -( I NEED sleep

    Thanks for listening!

    Laura x

  • Glad you managed to avoid A&E Lollie.

    I managed to last the day ok - coughing lots before and after school and quite breathless between lessons but I seem to go into a mode where I'm so focused on teaching that I detach from my body and don't notice anything. Just so tired but still got lots to do. How are you all this evening?

  • Well done on getting through today Spookymilo :-) Sorry you're still struggling though - I'd give yourself a limit of when you're going to work until tonight, then have some ""you"" time and a nice early night!! I tend to get into work early (7-7.30 or even earlier if lungs have done an allnighter)and go through lunch and try to get printed off and prepped for the next day, so can do the littlest amount of planning in the evening. I tend to do marking, reports etc in the evening, cos then at least its not as taxing as writing lesson plans etc when you're shattered!

    I am well impressed A&E was avoided, though didn't make it to work. PF still at 55-60% but no real wriggle room with meds except to up the pred, which me, my GP and cons really want to try and avoid. I am going to try and get in tomorrow though, hopefully get into that ""get through it mode"". Miss seeing my kids :-)

  • I did quite well after school so just need to mark literacy books and get a few resources ready. We have him on Thurs :( So everyone is going crazy at school - I just want a nice relaxed end to the year.

  • Sorry for being dumb, but whos him?

    Fortunately we aren't due anything like Ofsted or anything this year LOL, I don't think I could cope with observations etc at the min lol.

    Well done for getting loads done :-)

  • Sorry, meant hmi but iPad autocorrects stuff. We are requires improvement so having loads of people in all the time.

    It's good having other teachers on here. Do you find people at work understand how your asthma affects you? Mine are really nice about it but don't really understand, just ask me if I've taken my puffer and then think I must be ok. I also hate taking it where anyone might see so have a spare inhaler in the head's office and hide in there at break and lunch.

  • a lot of schools seem to be expecting the phone call :-/ hope it goes well!! Its definitely helpful having other teachers on here and being able to share experiences!

    I get a lot of ""have you taken your inhaler"", fortunately (or not for her) my TA is asthmatic also and will tell me to go and take mine when necessary - normally when I've avoided using it earlier and then you can really tell lol.

    I find that the people I work closely with understand, but I get a lot of ""its only a bit of asthma, take your puffer"" from other people - if only it was always that simple lol

    I am glad that there is another person on here who doesn't like taking reliever in front of other people .... I HATE it - that look they give you as though you are gonna die on them lol

  • Hi, sorry that this lovely weather is causing such a pain to us all.

    I'm new to asthma and newish to the forum so please forgive me.... What's OOH? Is have seen it a few times and not sure what it means.

    I take my last lot of 8 prednisolone tomorrow (finished antibiotics yesterday for yet another chest infection) and using blue inhaler a few times a day and symbicort 2 puffs twice a day. My chest feels tight at times along with the usual coughing and feel like the air is being squished from upper chest/base of throat. My peak flow is always rubbish, on good days I get around 350. On the drs advice I take antihistamine every day, I go on holiday in July (booked before this lovely world of asthma got me hooked lol) I'm thinking of asking for a course of prednisolone to take with me when I go. Has anyone out there done that before, any advise welcome thanks, as I said I'm a newbie.

    Lisa x

  • Hiya and welcome :-)

    Ooh is out of hours.

    I'd say 2 things based on what you've said 1. If you're still symptomatic, you should stay on pred til you don't have any - I am not medically trained, but this is what my gp has said, perhaps go back? And 2. apparently it's good practice for an asthmatic to have enough pred at home to get through a bank holiday weekend, so if you need to start it then you can and hopefully avoid those emergency situations.

    My advice would be to see gp about possibly increasing your course of pred so you don't go back downhill again and also about taking some away with you and having a back up stash for that BH weekend lol

    Hope this helps :-) Laura x

  • I wish I had someone who would tell me to take my inhaler, your ta sounds great! Mine is lovely but doesn't get asthma. I can be talking to someone and think I'm noticeably breathless but no one says anything, but maybe they don't like to interfere. To be fair to them, if I let the head know that I'm not sleeping she will make me go straight home after school. I just worry when she's not there or in a meeting because I can't really talk to anyone else.

  • Mine is a nice step 2 very well controlled asthmatic, but she does understand as she gets some symptoms with a cold etc. I think I scared her a few months ago when I went from just being a bit sob to having a full on coughing til you turn blue do when one of the kids sprayed an aerosol lol. Since then she always points out when I start sounding a bit odd - which is all to often lol.

    I don't think a lot of people like to point out when you're breathless etc, but then I think it also works both ways because I HATE using my inhaler in front of people lol

    What year group do you have? My little lot are fab :-)

  • Year 3, what about you? They are a brilliant class, not looking forward to having to move on. They keep asking whether I'm having them next year ;(

  • I have a y6 class - will miss em next year lol. They are a cracking group :-) cheeky monkeys give me some stick about ""dying quietly"" etc lol

  • I am another teacher who hates taking an inhaler in front of people (have never really liked doing it but would as a teenager). I often have to go into my cupboard (a large stock cupboard that is) to take it. I teach Keystage 1 and once had a year 2 (asthmatic) child say to me ""I think you need to take my inhaler"" while uncontrollably coughing but still trying to complete shared writing. At the start of this flare I was coughing a lot in a guided reading session and then suddenly felt a massive slap on my back (from a 5 year old) who went on to say ""has that made your cough better"" -if only!

    Lisa - Obviously I don't know the details of your asthma but I did take pred with me on holiday last year. I went to Alaska and was quite far away from hospitals, doctors etc (although I went with my sister who had just finished med school and the organisers reassured me that they could get help in an emergency). I had previously had maintance pred and while my asthma was going through a period of being relatively well controlled, it was not unusual for me to need several short courses. My GP said I was sensible enough to know when I would need it and for how long and gave me enough to last the whole three weeks should I need too. I have recently found out from here (and the asthma nurses on the advice line) that it is actually recommended that asthmatics who need pred have an emergency supply at home anyway.

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