So apparently I'm allergic to not being at the seaside :p.
I KNOW that I'm struggling because nights are getting worse and I'm SOB sitting at my desk, chest is tight and a bit gunky (sorry) in contrast to outside body-boarding in a cold sea or going up hills like on holiday.
The problem is, PFs aren't that different. I know that for me, they do show a pattern overall; my cons agreed there was a correlation just looking at the graphs and that I definitely do have asthma that is probably not well controlled. He's also asked me to do PF before and after reliever where possible and that shows I'm pretty reversible - some biggish leaps (and sometimes drops - even though the numbers themselves are ok when worse I seem to drop about 70-80 within half an hour/45 mins so can't maintain the improvement). I also know when I get worse they tend to mess around in the low green zone for a bit at the start of the flare then drop into yellow where they will stay for a while.
BUT if I am trying to decide what to do right now eg take reliever, take pred, it's not helpful. To put that in context, my PFs were at about 75% or higher when I was admitted to hospital (for 2 nights, not a really bad attack but ABGs suggested not something I could manage at home). In contrast, when I was actually feeling a lot better and able to do more (though still not great), PF was between 350-400 (which is low 60s% for me)!
Problem is, my cons has set the PF level for me starting pred at 350 (then take till over 400 for a few days). I'm unlikely to reach 350 even if struggling. I do understand his point about wanting to avoid pred where possible, and he has said he's considering what to do about getting me out of being stuck in yellow zone symptom-wise (after I moaned at him about how it was life-affecting if not life-threatening and he seemed to understand and float some possibilities).
BUT my appt's not till the end of Sept, and meanwhile I still have no options in this position other than pred. I can't help feeling if I were allowed to take some at the start of this kind of thing, it would nip it in the bud and mean just a few days on pred. If I wait for PF to go down, even if not to below 350, it's going to be worse and take more pred to sort - so in the end I""d either be on more pred or really stuck. Can't increase steroid inhaler as already on loads.
Cons has said if I'm really struggling symptom-wise but PF is above 50% then yes, I should do something like OOH/hospital. BUT then he said attacks build up so I should already be on pred at that point, and I know it's entirely possible that would not be the case if I'm only allowed pred at 350, though I'd agree the attack would build up - just not in PF terms. It does however seem very silly to need to go to someone else and probably have them give me pred and sort out a worse problem, when I could have avoided all that by taking my own early.
I get the need for objective evidence but it assumes a logic which my lungs won't follow (not sure how cons hasn't yet worked out that they are not really logical or rational hehe).
This is a bit of a moan so sorry about that but I do feel kind of stuck. I wanted a plan but having one that doesn't fit is almost worse than not having one because it leaves me feeling compelled to follow it anyway even when it doesn't quite work for me. I feel if I go to GP they'll feel a bit stuck as well and not sure whether to tell me to follow cons or use their own judgment (they know all about me and my PFs and don't really use them when deciding what to do).
as we've discussed off AUK, i think your cons hasnt quite seen the full picture with you and PF, and i do think that is something that needs to be addressed! I had a very odd conversation with a doc on resp ward (he filled out all the ppwk in full so i suspect he was an ickle baby doc) who told me a weird way with your tongue that you can get a really high PF no matter what! not sure why he told me this as i certainly didnt ask - my PFs tend to be higher than they should be anyway!
my suggestion would be, go to GP, tell them exactly what your cons has said re pred and 350, if they want to overrule him, then you can go back to cons and say you told them his thoughts and they disagreed and you didnt want to go AMA, and if they dont want to overrule him hen they can contact him and ask his thoughts, if the GP hears your lungs sounding nasty then cons might either be able to see you a bit sooner or might be able to change his mind from his previous decision. like you say - better to nip it in the bud!!
hope you feel better soon hun, let me know x
ps. the cons in A&E yesterday looked at the typed of things that trigger me and said he was going to prescribe Dubai on the NHS - you can come with
Hmm Philomela, I am with Soph!! I know we have also discussed this away from AUK!!
The idea that your cons would want you to wait until you are at 350 before taking pred is ridiculous. The fact that your PF changes in response to reliever etc and by as much as is does shows reversibility that can be nothing BUT asthma! Also you tell me quite frequently when I need to get help - I can be NOT talking at that PF ... silly cons!!
I reckon you'd be best nipping it in the bud, taking pred for a few days and then going back to being good like you have recently!! That way you can hopefully avoid having another admission, or like before going through a period of being really uncontrolled and miserable because of it.
I think that what sometimes consultants and other non asthmatic medics neglect to understand is that its not just the acute and ""need help NOW"" stuff that matters, but its the chronic day to day stuff!!! You NEED control to be able to function!!!
*hugs*
Laura xxx
From my experience, which often sounds a lot like yours, I would nip it in the bud now. I often find that by the time I have symptoms and my pf is consistently below 75% (I can often get one really good one and then cough like crazy) then I need more pred. one of my difficulties is that by the time all the symptoms etc tick the right boxes with the doctor, then I am at the stage of needing a few weeks rather than 5 days when I have got it early.
Also perhaps speak to your GP. I know when my symtoms were quite persistent (not severe symptoms but the type where you can only function with reliever every hour or so) my GP pHoned the cons for advice and she saw me the next day.
Thanks everyone! Hmm we are having several votes for GP, might need to be that then! ugghh. Though tbh if this reliever doesn't kick in soon I'm going to end up at OOH anyway (I'd ring them now, for advice re pred, but don't want to just yet as I've got something I must finish tonight and if for some reason I end up needing to go to the actual place rather than just do phone advice it will take a while which I could be spending in bed).
Of course the prob is whether the lungs will cooperate and make some noises (or I'd settle for lack of noise, that seems to work for some drs at least and is usually what happens if ai get bad (for me)).
I don't quite understand my cons tbh - last appt was much better than the first with some proper communication, and I do feel I can talk to him properly/challenge him (believe me, that will be happening next time!) but I don't get what he's thinking. He raised the level for pred from 300 last time (where tbh if I ever got that low I think something more than pred and 2 puffs of Vento might be in order) to 350 after I protested. I get the whole not wanting to be on pred thing, but his current approach seems to be very much 'don't do anything unless it\s really bad' when like you say Kayla, getting it early results in less pred and that doesn't seem to factor into his calculations. I do completely understand that he's still thinking and collecting info and that objective PF evidence will be helpful if I run into another of the 'it's in your head' types (his idea not mine), but I wish I'd had a plan meanwhile that fitted better with what actually happens with me.
After the first appt I'd understand his approach if he thought it was anxiety, even though I don't agree, but we seemed to be discussing add-on medication a lot last time. If he doesn't now think it's anxiety (and he had a quibble when I said I was not talking properly with a PF above 50% but I kept on saying I don't feel anxious when bad) then why is he still keen for me to do nothing until it's got worse?
Oh and Soph - awesome sounding cons! Yes please to Dubai on the NHS. I keep getting told by drs that I live in the wrong city/country but none of them has ever offerred me a holiday on prescription grrr. Also Dubai sounds way better than the a outer Hebrides as GP suggested.
I have started pred myself twice this year and then gone to the walk-in clinic at first opportunity. My own criteria for starting it is something my sister said to me when I rang her for a second opinion last time and she asked, 'Has your asthma ever improved on it's own when like this?' My immediate answer was, 'No.' Which then obviously helped me make the decision. And will help me in the future.
Btw, are you on antihistamines? I can't remember you mentioning them.
I agree with KaylaCP, nip it in the bud, I always have to with mine. Is it worth asking your consultant to go by your symptoms more than PF like mine did (and my GP does.)
Thanks JF! I am inclined to agree with nipping it in the bud but the plan has confused things (so much for having a plan...).
I am on antihistamines yes - fexofenadine and Avamys nasal spray. Doesn't seem to stop me having random mild allergic reactions to unidentifiable triggers, though I'm sure they'd be worse without the antihistamines.
I will definitely be asking my cons to go more on symptoms or at least on what my PF actually does rather than what he thinks it ought to do. AUK nurse did say usual guidelines are increase inhaled steroids below 80%, pred below 60% so it isn't wildly off base but it doesn't really take into account what actually happens with me (ie can't increase inhaled steroids - I'd much rather do that than pred) and also PF is not that neat. I may ask if I can do what I've seen others on here doing which is to have a steroid-only inhaler for this kind of situation, to get more steroid in without pred or more LABA.
I rang the asthma nurse in my hospital clinic who was fairly helpful though hadn't seen my notes - she said to ring back and she'd have a look for them and meanwhile to see GP for them to check wheezes, air entry etc etc. No appts left, even urgent ones, so GP is ringing me - feel advice is more useful anyway since I highly doubt my chest will make any useful noises at this stage - it might go quiet later but at this point I'm unlikely to be doing anything interesting.
Are you still on 3 puffs of symbicort twice a day too? I am back on that (as of June) so as you say, no room for an increase if you are.
Yes, still on that. So no wiggle room.
I am feeling cross with cons again - GP read out letter and it's going on about over-treatment and only using Atro where 'justified'. This is NOT really what it seemed like he was saying in the consultation (if over-treatment, then why all the discussion of potential new medications?) and GP said why on earth would you restrict reliever use by PF when it's designed to be carried around and taken when feeling tight etc? And I don't think I overuse it - I may have done in the past as I wasn't sure about how to fit in Atro so kind of used it partially as a preventer type thing (but then hosp told me to!). And yes, I was using a lot of Vneto when I saw him but I wasn't controlled! I can happily go all day with 2 puffs or even none on occasion if good.
She really wasn't sure what to do as she has cons plan there but could appreciate I was struggling and the points I made. So suggested (said she felt naughty doing it) 3 days' of 30mg pred but if that doesn't work she doesn't know what to suggest, except to keep on it.
I am really quite annoyed about all this. I know I'm not the easiest to deal with lung-wise (GP said I might not be anxious about my asthma but she was lol) but I've got to know it better now and have a bit more of a sense of what works. Having someone come along and mess around telling me things that don't fit with the idiosyncrasies of my lungs just makes it all even harder to deal with. It should't be *this* hard - the drs in hospital who didn't know me and weren't resp specialists didn't seem to find it too hard though admittedly they might be stumped long term.
You do have something to take to your next appt, your experiences on holiday and level of symptoms there. Did you keep a PF record on holiday?
I think the more you can emphasise how you feel when you are good it will remind him of where you want to be.
Yes- been keeping a prepost Atro diary and general diary all the time. Shows a fair bit of reversibility which I think justifies my usage and shows I'm not just puffing away randomly (I said to GP 'don't know why he thinks I just puff away on it, it tastes foul'). And in fact I leave it longer than I might do otherwise if PF is high or it's not really uncomfortable because of what he says, so if anything I am slightly undertreating- I certainly don't reach for it at the slightest hint of symptoms.
Being the massive geek I am, with access to a stats program (and knowing he is a researcher so may be tempted by some figures) I am strongly tempted to run some analyses to show a) the effect of Atrovent on peak flows and b) (if I have enough data) whether peak flow is a significant predictor of symptoms. (Yes, I am completely aware this is very sad but hey, I'm talking his language!)
Will defo emphasise that it's possible to get to a really good place but that it would be nice if it lasted more than a week. As Laura said, I really don't think they appreciate the effect of symptoms on daily life and I am getting very fed up of being told I 'over-medicate' when I am affected by symptoms so much. I thought I'd got this point across but I'm not sure now.
That is good that you have all of the info. If that was me, (I have a love of numbers!!) I would do all of the statistic stuff for myself anyway and you could always quote from it lol.
I think anyone who hasn't experienced prolonged, uncontrolled asthma can truly understand the impact it has on our lives.
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