Bit confused - advice needed (not urgent)!

Sorry if I'm missing something obvious here or making a huge deal out of nothing!

Basically, I thought the Symbicort was at least starting to work as things really began to improve about 3 weeks after I started it.

I did have a blip with a cold which didn't help but when I was in America I was still noticing some improvements (like longer times between relievers than I've had for absolutely ages, better exercise tolerance ditto, not getting affected for days by a trigger).

But I hope I haven't been imagining it all or it was just coincidence, because since my last day in America and the plane back, things seemed to have slipped back to the way they were before the Symbicort.

I'm hoping this is a temporary blip - I can't quite work out why it's happened - but I'm not quite sure what to do. Normally, while I'd like to ask my GP, there hasn't been anything they can really do in this situation and I have to wait for the cons (next appt 27th June...um, yay...my favourite way to make an idiot out of myself). So I kind of gave up going to ask them unless I had something extra going on like a chest cold etc.

My cons mentioned trying a high dose of pred again if the inhaled steroids weren't doing the trick. Well, I think they sort of are (he may disagree with me), but apparently not right now.

Really wondering if it's worth going back to the GP this time, and possibly trying the pred sooner - maybe it would kick things into submission? Or should I wait to see if it will settle down by itself?

I suspect there's a really obvious answer to this one but I'm having trouble collecting my thoughts and seeing it (I think due to a night sitting up on a plane plus annoying builders plus disturbed nights with lungs).

18 Replies

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  • A couple of things spring to mind, but they may not be relevant.... The first was as you have been in the States maybe you have been lucky enough to be staying in an area where there are less of your triggers.... Hence the asthma being on best behaviour...

    The second is that you have just had a reasonably long flight back from the states and being stuck on a plane with re-circulated air means if you are suceptable you are more than likely to pick some sort of bug up.

    It might be that your body is also adjusting to time changes and jet lag which may take a few days to get over and this might be upsetting your asthma.

    It might be now you are back home you are in your normal surroundings with your normal triggers.

    If you think you need pred then either a phonecall/visit to GP or out of hours maybe in order.

    Anyway I am waffling so will stop now...

  • Thanks! Well the lack of sleep probably isn't helping, but then part of that is due to the lungs...

    Realise I wasn't clear - it wasn't at its absolute best in the States, but it was bouncing back from triggers better than it usually does and didn't seem to object too much to all the walking I did. It was at its best at the start of May, at home, before the cold, but managed the cold better than I'd expected and I got over it more quickly than expected.

    I've been in London for the long weekend, round where I used to live (but it was better then).

    Very confusing really but I'll settle for not knowing why if I can get things sorted. I suppose I'm also confused about whether it will settle on its own or if it needs help/ a kick up the backside.

  • If you do not feel right with the asthma then I would go back to your GP and get some more pred, it better to get things resolved sooner rather than later. I guess if the symbicort is going someway to helping then thats good, things are going in the right direction, you will always get blips where your asthma is misbehaving. Its not always possible to find out what is behind a flare up.

  • It also sounds like you've been a very busy bunny which I know for me if I get physically tired, it will make my asthma flare up

    Take it easy. X

  • Hmm that never occurred to me! I do get knackered when asthma is playing up (like now, sleepy but also exhausted) but hadn't thought the other way round could be a possibility. Though I did tolerate all the walking I did in Boston pretty well.

  • Was still confused and going round in circles so I rang the AUK nurses who told me no, I can't wait to see if it goes away on its own and to see my GP in the next day or two if I was needing reliever that often. I did tell her there was a time when I used to take it that often every day, but she still thought I should see someone if it was going under 4 hours especially if I've been doing better recently.

    So I'm seeing my usual GP on Friday (luckily he had a normal slot free then so I didn't have to do the urgent appt lottery and risk ending up with someone who spends the whole appt going over old ground, or makes me feel like a hypochondriac timewaster again).

    Anyway, I don't reckon even the good GP will necessarily be able to help but the AUK nurse did point out that even if he just tells me to wait for the consultant, at least I've seen someone meanwhile and I can discuss it with him, which is a very good point.

    She did say I didn't have much wiggle room on the Symbicort dose I'm on which surprised me as I know some of you on here are on more - mostly much more severe than me, I know, but on the other hand it suggests that there is somewhere to go from 2 puffs of 400/12 twice a day, and would have thought that was preferable to pred, but perhaps it's much slower, or needs a consultant to go higher?

    Anyway, sorry for waffling on again. I still feel like I'm perhaps making a bit too much fuss but I guess if I can somehow give my lungs a kick up the backside and try to stop them sliding backwards again then it's worthwhile pestering my GP. I haven't seen him for a whole 2 months, he'll be wondering where I've got to lol!

  • Philomela, you did exactly the right thing calling the AUK nurses, and even better by arranging the appointment with your GP. A victory for common sense!

    The only problem is, in my head I now have this cartoon of you trying to kick your lungs up the backside, which involves lots of falling over and even more kicking of anything BUT your lungs. I only wish I could share and then we could both fall about laughing.

  • Thanks! Look at me being all common-sensical lol. Though I'm psychic and can predict how it will go - we'll discuss the Symbicort etc, he'll probably listen to my chest, and fail to hear anything remotely interesting (but at least he knows this doesn't necessarily mean anything), discuss the fun mini-break activities the RBH has lined up for me and I may or may not leave with pred (my abilities can only go so far).

    Still, at least I get to discuss things with him - hopefully, if he's not in a massive rush; he usually takes the time I need though which I'm really grateful for.

    No need for telepathy as now I'm having that same mental image lol - I'm not even close to being able to kick my lungs anywhere as I'm possibly the world's least flexible person.

  • Definitely not making too much fuss!

    We all know needing that much reliever that regularly is telling us that our lungs aren't happy so no, you are not making a fuss, you are being sensible and listening to what your body is telling you.

    Glad the auk nurses were helpful again, I love them!!!

    Hope your appointment goes well xxx

  • Yes they are great! So realistically I'm listening to what the AUK nurse is telling me to do - but as she pointed out, I wouldn't have rung in the first place if I hadn't been thinking I might need to do something about this.

    I guess I find it harder because I'm actually quite used to this much reliever being normal; the longer gaps I had with (I hope) Symbicort have been the exception! But then I'm down again to 2-3 hours and even noticing symptoms after 1, so even I can tell that probably needs me to do something.

  • Hope you get things sorted and can get back to better control again.

  • Hope you get sorted soon Philomela, and GP appointment goes well. When are you off to RBH?

  • Thanks Lou!

    I went for the first appt on 2nd May but tbh it seemed a bit pointless as they didn't seem to have much info and he didn't ask much. I'm just waiting for the letter still to tell me when the tests will be - was told would be about 8 weeks but a month in I still don't know when they'll be!

    Definitely not looking forward to the tests - I wouldn't mind if I thought they were going to be useful but I just have a nasty feeling they'll be unpleasant to do but won't show anything and I'll be back to square one.

  • Well, sometimes tests show something, sometimes they come up normal. But, whatever happens I'm sure they'll listen to you to find out how things are so that you can get to the bottom of things and get lungs sorted. Hope you hear from them soon. In the meantime keep trying the chocolate, small doses when required and in an emergency double the dose :)

  • mmmm thanks Lou. I must have had the equivalent of back to back nebs today with the humungous (sp?) choc brownie at lunch - I feel like Bruce Bogtrotter! Sadly no effect yet on lungs, they're still misbehaving.

  • Oh no Philomela. Very naughty lungs, I do hope they behave themselves soon.

    You might feel like Bruce Bogtrotter, but do you have as much chocolate all over your face? Maybe a humungous choc brownie is overdosing??

    Look after yourself, and beat those lungs into submission soon.

  • Well, I've seen the GP. He said he couldn't hear anything obviously nasty suggesting an infection but given the way it's happened he suspects I might still have one (possibly from the plane), particularly since I realised I also haven't been feeling that great for the last couple of days.

    So he's given me a course of amoxicillin, told me to up to 3 puffs twice daily of Symbicort for a few days and email him if it doesn't work. I told him about America as this has been since then and he said 'well if you will go to these dangerous places ;)' lol.

    He didn't want to give me pred; I think he might have if I were a bit more normal but he's reluctant to knowing it didn't work last time (I think he feels it's not for experimentation which is fair enough, and that the hospital can do it if they really think it might help).

    I read on another recent thread about eating yoghurt with live cultures to avoid the usual side-effects. I've bought some Danone Activia which I like and which says it has live bacteria that are good for your gut, but just wondering how many I need to have - is one a day enough or should I be trying to have one after each dose? (it's 1 3x a day capsule).

  • Lets hope the antibiotics and increased symbicort help you quickly! :-)

    The last couple of times I've had antibiotics the pharmacist recommended some probiotic capsules qnd they were fab, none of my usual side effects from the antibiotics.

    X