Soon now, I will have to stop the clenil & serevent inhalers for a week before the dreaded bronchial challenge test.
What I want to know now, esp as I've now seen 2 consultants who aren't taking *my* triggers on board, is this.
If I find when I stop the 2 above inhalers, that my peak flow readings go significantly down, is that evidence that I have asthma?
And what other things can be found apart from asthma by the results of a bronchial challenge test (ie things that produce similar symptoms of asthma, like that tight chest, coughing, hard to breathe, feel like you are being strangled, etc).
Ah the consultants who don't listen - know all about that one!
If your PF does go down when you stop the preventers and symptoms increase then I would have thought that would be significant - they often do go on what your PF does (mine isn't that sensitive so it can be frustrating). However I'm not a doctor or anything obviously so I could be wrong about that; I also don't know if it would affect things in a week as I'm not sure how long the steroids take to wear off - I know for me they take longer than that to start working. However stopping serevent I would think should have a more immediate effect.
Of course, if they weren't working for you to start with (I found they didn't for me) then nothing much is going to happen, so any effect will be worth mentioning!
Re the challenge test: wow a week! I'm supposed to be having one at the beginning of August but they haven't given me any info about stopping at all - good to know they've told you a week as it means I prob. need to ring up and check a bit earlier than I thought.
As far as I know, a negative test can make it unlikely it's asthma - but apparently not impossible, as not everyone reacts to the same things (I found this when I was looking up the test on the Heartlands Severe/Brittle Asthma Unit, not because I have severe/brittle asthma or am going there but because I couldn't find the info I wanted elsewhere).
A positive test means asthma isn't ruled out (but then according to the above so does a negative one sometimes, plus you can have false positives/negatives), but I'm not sure what it rules in - had a quick google but can't find anything. Maybe ring the asthma nurses here?
Oh, and if you have the feeling of being strangled I'm not sure how this would relate to the challenge test but you should maybe ask about VCD? I don't get that feeling myself but they're doing a test for that anyway as it can mimic asthma; basically it's when your vocal chords spasm in response to something like exercise, so with me they'll be putting a scope in then making me exercise while it's in (fun times!)
Hope this ramble helps...
Hello,
Hmm stopping a week before, was told different things at my local hospital but settled on I think 12 hours for seretide (combined serevent & clenil) and less for others. That could explain a little as mine was borderline negative apparently ruling out asthma which could also be due to top dose seretide and not stopping it early enough.
It may be with consultants that haven't listened to triggers that they also take a negative test conclusively. Some do not look at peak flows particularly prefering to go on symptoms, inhaler use. It can be more difficult too when you do not wheeze. Response to inhalers and a drop if as you say they are not taken for a week should be considered.
However, on the flip side, a positive result (meaning lung function dropped by 20%) doesn't mean it is definitely asthma either just that there may be something going on lungs wise.
I've been referred on where they are looking into other causes and influences on symptoms and hence more tests.
Philomela, good luck with yours and definitely worth checking with maybe their lung function lab?
I was told the same TJ, 12 hours for the Symbicort, 4 hours for ventolin and I think 5 days for antihistamine.
I was told not to take my seretide on that morning, so would have been well over 12 hours since evening dose.
TJ- what's top dose seretide?
Seems to vary a lot between different hospitals, not sure antihistamine was mentioned. Some also say no caffeine etc
lou, the maximum daily licensed dose of Seretide is 100 micrograms of salmeterol and 1000mcg fluticasone = 2000mcg beclomethasone
Wll be interested to hear what RBH say then!
Have also heard about no caffeine, and one included no chocolate...oh my. No relievers and no chocolate and then they make me worse? Why am I agreeing to this torture lol?
Cons today mentioned in passing that methacholine is what Atrovent counteracts...so really seems like I should have that instead of histamine given Atrovent works so well! Though cons did say I appear to be fairly sensitive so he expects me to react, just not necessariy to show any LF change.
thanks for your comments and replies.
yes it seems hospitals differ, and I'm wondering if me having been told a week by the clinic & consultant at the hosp is because of the inconclusive outcomes in previous other tests I've had.
Mine also does mention stopping anti histamines, and ventolin too, but for a day or something like that beforehand.
Hosp told me the worst thing that could happen is I'd start coughing, and that they'd stuff me full of ventolin with that machine if it was clear I was getting an attack or suffering. I feel a little reassured by this, and have faith in the staff who will be carrying it out, whereas before I was panicking about not knowing what the worst case scenario would be.
Am in kind of good spirits (well apart from ye other half but that's another story grrrrrr), because I am still on all my inhalers, anti histamines, etc.
I have told everyone that for that lack of inhaler week, everything is cancelled, and that I will be staying in doing nothing, ie to avoid as many triggers as possible, as it's going to be a tough week without the 2 other inhalers (might even ban my other half too...!).
But I too need to know what is going on, so I am going to try my best to get through that week in order for the hosp to get a proper reading, whatever that may be, positive, negative, whatever. I hope that I then get to see a 3rd (lol) consultant who then might be able to tell me well is it or isn't it and that they'll then be able to give me the right treatment to control whatever it is that's going on, even though to me asthma still seems to be the most logical explanation. Well, we'll see, soon.
Good luck to you Philomela and anyone else here who are due to have this test, and any other test.
oh yeah, not sure if this explains that strangling feeling, but I was diagnosed with laryngitis last month... Still got it a bit. Told hosp, but test will still go ahead as its well and truly on the mend - that is, my voice has come back.
Bbert- I hope you find some answers from the tests so that you can find some treatment to control things. And hoping the week without inhalers goes ok. I find it a bit scary stopping inhalers/meds.
Philomela-even more scary having to stop the chocolate!!
Not sure if this information I have helps but I am due to be admitted to Royal Brompton Hospital in 8 days under Difficult Asthma Protocol and with my admission letter I have been told to stop my antihistamine medication 3 days before my admission date.
I must not use any of my inhalers (I am on Seretide 250 combination Salmeterol/fluticasone inhaler and Flixotide 250 inhaler)for 24 hours this also includes no nebuliser medication, the only thing I can take are my Prednisolone tablets and that is because I have been on them for two years'.
thanks Lou.
Yes I think its 3 days for my anti histamine stoppage too.
Time is getting closer, I'm getting just a bit nervous, but still willing to try my best.
hope you are all doing ok tonight.
(ps my other half is back in my good books!!)
Just skipping back to the seretide dosage because when I saw the asthma nurse earlier in the week, he told me to try taking an extra puff of seretide morning and evening, which takes me up to 3 puffs twice a day - 150mcg salmeterol and 1500mcg (I'm on seretide 250/25). Should I stop taking that much? Why would the asthma nurse tell me to take more than the maximum dose?
Also realised that as I normally take 2 puffs twice a day that puts me at 100mcg salmeterol every day which is also over the maximum. Do doctors often increase inhalers over the licensed maximum?
Sorry to hijack thread bbert, good luck with stopping your medications.
I'm on 2 puffs 250/25 twice a day, so 1000mcg fluticasone/100mcg salmeterol. I'm sure that's what TJ meant as it's a fixed combination. I guess you follow instructions from nurse, but did he say how long to take 3 puffs for? Might be worth seeing them again asap
No he didn't say how long for, he just said to try 3 puffs instead of two. I'm wondering whether it's that combined with the pred that's making me feel so odd. I felt fine when I woke up, took inhalers etc. and had breakfast, then had the pred and started feeling like bursting into tears, went all shaky etc. Not sure whether I can see him outside clinic on Tuesday afternoon, which I can't make unless I stay off work, so may have to try GP first thing tomorrow instead.
Hmm I think they can - I was already on 2x2 puffs of Symbicort 400/12 daily, and GP told me to up it to 2x3 daily during/after infection which seems to be above what the leaflet said (takes me up to 2400 mcg of budesonide and 72 of formoterol).
I asked cons about how long I should stay on the increased dose and he said 'until you feel better, because it's always going to take you longer to get over these things than it would non-asthmatics'. Just think they don't want you trying it for yourself, but at least with Symbicort cons said as far as he knows (and he does know a lot about this) there aren't any particular bad effects of taking high dose inhaled Symbicort long term.
However it does sound like maybe it's not having a great effect, so seeing the GP/asthma nurse sounds like it might be be a good idea so they can tweak something.
Hope you feel better soon!
To clarify, I did mean 100mcg salmeterol and 1000mcg fluticasone, as lou says it is a fixed combination. Sorry for any confusion.
Spookymilo, it is possible to prescribe more than licensed dose or off formulary uses. Best to go back soon and mention the problems you're having rather than stop - could be the pred and the extra salmeterol. Up to 200 mcg salmeterol is used (not normally in asthma) as I was told when GP doubled mine last year, they don't always worry about the extra.
Good luck Bbert (glad to hear other half is back in the good books), asthmagirl, Philomela and anyone else waiting for tests/admission/ news there of
thank you.
Well tonight I'm without the full inhaler dosage, so far so good, PF not down yet.
Relieved there isn't a heatwave, nobody having barbeque's, that there is rain, and heating doesn't need to be kept on. Hopefully these little but crucial elements will help me through this week...
will update.
Good luck Bbert, I hope it all goes well in the coming week. x
Fingers x you manage bbert.
X
that's nice, seeing your posts, (((((((thank you)))))))
Coughing more than usual this morning, & PF not gone down too much yet.
Off to tape some punk music - anything to take my mind off it!!!
Laters & take care everyone
Good luck! Hope the week's not too bad and the test goes ok. At least if you really do feel awful this week compared to normal you can chalk it up as something significant to tell the drs!
thank you.
a little bit harder to breathe normally, a little teensy wheeze (I don't think I wheezed before, not that I ever noticed it b4), and PF is going down a bit today, but I am ok and still feel determined to see the rest of the week through for the test on monday. I think, at the mo, I would rather suffer and have a lowered PF so that they can finally say yes, it is asthma (or whatever) - just to get a proper diagnosis so that I can hopefully get on the right treatment.
will update again.
take care everyone.
I hope things don't get too uncomfortable. Good luck again for monday.
thanks Lou.
Well, one and a half days left to go.
When I take breath's in and out it is rather noisy, esp when I breathe right out, so this is something I am deliberately going todo on monday, I want them to hear it and take note, even though it'll be the lung testing clinic and not the actual consultant.
Also it's tighter in the lower throat and upper chest region now.
And my peak flow recordings are no longer in the 400s, but are now all in the 300's.
I've now stopped the anti histamine as well, so all I have left till sunday night is ventolin.
I am really pleased I've been able to cope with this week so far, and that it's nearly over, and I just hope that they can now detect what is wrong with me on monday. If need be I'd do this week again. Keep em crossed that there is a method to this madness for me, ty.
Also have noticed most of cramps in legs and feet gone, but crampy type of feeling in hands remain esp when I wake up in the mornings - I can only put this down to the arthritis and not to the inhalers as I'd previously thought.
Meanwhile, things with other half gone from bad to worse, and arthritis is playing up too, my social life is virtually non existent and I feel quite miserable and lonely and pessimistic and tearful about my future, but thank heavens for a little bit of choccie and music dvd's (the rock chic in me lives on), they are a life saver, as is the support from this forum. thank you peeps. And take care.
Not long now! Crossing my fingers for you on Monday - it does sound like you've got something definite to show for being off the inhalers, even if the week hasn't been the best. Let us know how it goes - want to know if it was ok for you, but also as I'm due to have one so interested to know.
When are you next due to see your consultant? I've finally got the trick of how to write things down: I used to do it really detailed but then didn't look, so I find just a couple of points on a piece of paper for me to refer to helps. Maybe write it down now while it's fresh in your mind? And you'll have the PF diary as well.
Really hope you do get some answers: like you I'm not nearly as severe as others on here but I am officially 'weird' lol (there are a few of us on here) and I do know how frustrating it can be trying to get a diagnosis when you're like us. But I have made progress and think - hope - I'm nearly there! I've felt very down especially last year when there was a lot I couldn't do due to the breathing even though it wasn't severe, and a couple of other issues too. The breathing is still playing up now a bit but I am far less restricted than I was, and the other things did improve, so I do hope things start looking up for you and you get at least one thing sorted - and that the arthritis improves!
Chocolate and rock sounds like a good combo - just be careful with mad dancing lol!
thanks Philomela. Yes I will post what happens next, if it can help you or anyone else who might have this test on the horizon then I hope it will help, my posts.
I am now happy to have survived this week, in about 12 hours or so from now I will be breathing better than I am now, but at the same time, I am nervous about the test, and about the result.
I've already been discharged from this cons's clinic but will hopefully find out the results by the end of the week if not tomorrow.
If I get fobbed off then the PF diary is coming straight back to my gp with me, and I will then ask for a second opinion. Surely my lowered pf must mean something, something that a consultant can't undermine. Well, we'll soon see I guess.
ta, the arthritis is a toughie to get my head around, if I had a way I'd hop on a plane and go bury my head in the mediterranean sands somewhere where the views are awe inspiring and where I wouldn't have to think as I'd be totally occupied. Instead of that there's dreams. Nobody can take my dreams away.
to be continued...
had the bronchial test today. Wasn't as bad as I feared. They added things to provoke your breathing, but gradually, and kept checking I was ok before continuing. They answered all my questions before continuing as well.
I should get the results next week.
Glad it went ok - crossed fingers for results!
If you don't get anywhere I would definitely say get a second opinion: my GP decided to refer me again after i was discharged but not getting anywhere, and I asked to go somewhere else as I didn't feel it would be productive with the cons I'd already seen. You have the right to go anywhere, so even if it's a bit further away, if you're just not getting anywhere at all a fresh pair of eyes at another hospital might help. Maybe if your GP is helpful you could ask him/her where to go and explain - mine was very helpful about the possibilities and suggested the place I now go to in London (which isn't the closest but an ok journey for me).
thanks P.
Well I still haven't got my results.
Hospital said it might be a month before I get them... -a MONTH???!!!! What a disgusting NHS service... Really bad.
So my GP is now going to try to get my results for me, as I'm not able to get them myself.
meanwhile gp says carry on with inhalers, which I am doing.
At least I can breathe, that's the main thing.
take care to you all x
Any results Bbert? Any luck with getting further? Crossing fingers for you!
I've just checked with the Brompton re withholding my medications and the period is a LOT shorter than a week. tbh a week seems a long time but I have seen longer times than I've been given and I am a bit worried that I'm going to mess with the test results if I only withhold for a short time - yes, I know they must know what they're doing but with me I feel like it could so easily tip it into a negative!
Also, they haven't actually told me what time of day any of the tests are, will have to check, and then have multiple tests where I have to withhold before but they give me reliever after...hmmm.
Philomela nope I still haven't got my results, doc has chased up the hospital but no official response at all - they have probably all jetted off to South America or somewhere for all I know... At this rate it may be mid August before I get the result.
Thankfully gp has confirmed I can still have the inhalers in the meantime. But I won't forget your tip about getting a 2nd opinion if need be.
It may be each person's situation results in differing withholding times. But I did have a word with the clinic and they said if its too hard to stay off the inhalers I could rebook or cancel, they were very understanding about my initial anxiety.
It was possible in my case to be offered different days for the test, but each one was for the first appt of the day, so that morning I left by cab really early and chilled out in the hospital canteen while i waited. Perhaps you can tell THEM which appt time you'd prefer.
I have to add, after my tests, after they gave me the reliever by that nub/neb machine thing, they then did another test to make sure all was back to the baseline, and they made very sure I was ok before I finally left.
I can sense your anxiety about the test, but remember its a gradual thing and a lot of checking is done along the way. If in doubt contact the clinic now and have a chat with them, that alone may help in other ways. And I'm sure you'll be getting your results a LOT sooner than me!
And please update about it whenever you can.
Thanks Bbert! How annoying, hope you have your results soon - wonder why they're taking so long? Think you're prob right that there's no-one there/they forgot to respond etc!
Thanks for the info; I did actually ring them today about it and spent a while as it's all a bit of a mess and some other tests hadn't been booked! *Think* I have it sorted but will be spending 2 more days there than I initially thought (am having a few other things as well as the challenge test). Think like you one of my main worries is that I'll have the symptoms but it won't show anything - esp. as I am really bad at doing spirometry.
Test is on Thurs, but also have to give meds up for Tues morning lung function - tbh I may just not take them on Tues evening as that seems to be the only time in the 4 days I can take the preventer ones!
Will have to wait and see - but crossing fingers you get your results soon and that they move you forward somehow - defo get a 2nd opinion if needed. Glad your GP is being sensible!
keep a pf diary as from now, even if you aren't sure you're doing it ok!
I am sooooooooo glad I kept the pf diary, because I have been able to tell my gp about it going down as the days passed during that week, from the 400s to the 300s. I have kept it & its this the gps also querying. I hope the hosp respond in full. There must be a reason, whatever that is, why my pf dropped that week when I was off the inhalers.
So my message to you before I conk out for the night is just do what you can, and keep that diary as from right now (doing it twice a day) keeping a copy for yourself/gp as well.
Thanks! Good point, I hadn't been keeping one as other cons said didn't need to anymore, but probably an idea to keep one just before this.
Hoping your PF diary does prove useful! Mine is weird, it doesn't always drop that much...
Philomela - wondering how you got on with the bronchail tests this week? Hope to see your update soon/when you can. Take care for now
ps I still haven't got my results
Thanks BBert but it's actually next week - Thurs! I'm going in on Monday till Thursday.
Can't believe you STILL haven't got results! Hope you get them soon - at this rate I'll have mine before you do!
thanks P, and the very best of luck to you for your tests.
Mine was normal! But I did notice being off meds before, and I did have a good response to Ventolin after.
Any news on yours?
now that you are apparently normal lol, what happens next with you?
As for me, I've been labelled as someone with either (yay - great 3 things coming up by a ""specialist"" - that lets that consultant off the hook don't it, she says in a sarcastic voice) a chronic cough syndrome (codswallop), psychosomatic (tripe), or vocal chord dysfunction (no evidence - yet, only a recent bout of laryngitis to go on - hmpfff but that don't account for the tight chest/bad breathing etc), and I am being packed off to see a resp physio soon, but (thank the lord) I can carry on with my inhalers.
me thinks a second opinion is on the cards.
Personally speaking I am convinced what I have is occupational/environmental toxins triggered asthmatic symptoms, only as I'm not a consultant the only proof I have are my diaries whenever I feel naff and what causes the naff feelings, but this to date is being totally ignored and rubbished by the docs. Also the fact that my readings DID drop but apparently not quite enough for an asthma label, but they did drop by more than 10%. Yeah, a second opinion is what I'll try for, as well as seeing the resp physio too.
a pain in the...!
Well, they also stuck a camera down my throat while I was exercising, and concluded that I do I fact have VCD, so more physio, maybe speech therapy! However, I am not convinced that this explains ALL my symptoms, even though there can be a lot of overlap with asthma symptoms and triggers. For instance, as with you, I do find my asthma medications help, though not enough - hence the referrL. Back to clinic on Wed to see if they agree with me, but I suspect they will not. I do hate these appts, though they seemed maybe a little better at listening than others...hope that wasn't my imagination!
Massive sympathy for you - yes it's better than being severe and on lots of pred etc but I have been where you are with them not listening and the normal tests but still symptoms and it's really annoying! At least you can carry on with inhalers (which is good, but odd, if they think it's one of those three as I understood mostly they don't help). I think your approach sounds best - if you do have VCD they ought to look for it properly, not just shrug and say it must be that - if you've got it and it/'s causing any of your symptoms it needs proper treatment, and I think not all physios can do that? And bear in mind that quite a lot of people with VCD also have asthma.
But yeah, I would see physio anyway (hope it helps - mine haven't so far I will say but that's perhaps just me) and defo ask for 2nd opinion, as I think someone ought to be taking on board your diaries etc. Think you said GP is good? Helps to have them on board!
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But I did notice being off meds before, and I did have a good response to Ventolin after.
Coughing
My visit to the Brompton and Bronchial Thermoplasty
bronchodilator reversibility test
