Argh! opinions please!

ok, my lungs are being really horrible to me at the moment (we aren't currently on speaking terms!) and i'm on 30mg pred for 5 days, the last of those 5 days is tommoz. My asthma nurse is an absolute legend and has been ringing me to keep up with how my lungs are doing. Saw her today and she agreed i sounded better than last time she saw me (about an hour before i went to A&E) but that if she'd heard my breathing on someone else she'd be prescribing pred. I'm going back to see her tommoz, and she will ask my opinion on the issue, and i really dont know what my opinion will be.

For pred: my lungs are feeling pretty awful

any benefit im getting from the pred has only just started to kick in, if there is a lot of underlying inflammation it may take a while to go down

if i wasnt already on pred id probs want a short course

got exams at the moment, so really could do with being able to breathe and not going to hosp

Against pred: Pred is EVIL and not my friend!

trying to get some adrenal function back

given that ive not had LOADS of benefit from it (only *just* keeping me out of hosp) then they might want to up me to 40mg, which i dont particularily want

I dont sound *that* wheezy, and its not all the time, a lot of it is SOB and tight chest, and i always worry about the pred conversation when im not wheezy

I know only me and doc/nurse can decide what to do, but i just would be interested on other peoples take on the situation so i can have a proper think about it. what would you want to happen and why? Im going for the wisdom of crowds approach!

9 Replies

  • I'm also half way through a 5 day course of Prednisone 40mg and I'm a little better but not much. My chest is still very tight and my speech is still affected. I'm going to call back in with my asthma nurse tomorrow to see what she thinks.

    Not being able to breathe & talk properly is a PITA. I haven't any advice for you I'm sorry, as I'm not even sure what's going on with me. Other than keep in regular contact with your asthma nurse.

    But I do hope you feel much better soon and you do well in your exams :)

  • Hey Soph,

    Sorry your still not feeling too good. Its so frustrating!!

    Given your last episode last weekend, and if your still symptomatic its probably not the best idea to be off the pred to be fair, especially as you have exams coming up - you want to be as good as you can to get through them!! In your shoes I'd personally keep up with it - not what you want to hear I am sure.

    If you are anything like me, every time I have come off a short course (if I haven't been completely recovered) I flare up again usually within days, which lands me back in and back at square 1. Also it might make you able to avoid a higher dose for a longer period of time. I HATE pred too, but it does do a job, and anything to keep you out of hosp and as good as you possibly can be for your exams. Though I totally get the adrenal gland issue etc, that's something that is really concerning me too, but coming off it doesn't seem to be an option anytime in the near future.

    Sorry if I've been of no help!! Hope you're feeling better soon

    Laura x

  • Hi Soph,

    I have been asking for pred (even though I hate it) for weeks. I had it about two weeks ago - it did take a while to kick in and was still symptomatic at the end. Over a week later and I'm still struggling and have just had my first dose of the next course. As I have got worse, I am now having to take a stronger dose for longer to gain some control (mainly to allow me to sleep/move/go outside. Any impact the first course had was probably lost (as the auk nurse helped me to realise). The reason I fight for pred is that a few years ago I was reluctant to take it and then ended up in hospital (the start of my last really bad flare a few years ago which lasted over 6 months).

    Obviously, I don't know what works for you but thought I would share my experiences. It does sound like you're having a tough time at the moment - not what you want with exams.

    Take care

  • yeah -its so frustrating when you don't want pred, but then probs need it! i really fought for 30mg instead of 40mg - possibly a mistake but i think its part of how i deal with the complete loss of control in my life atm! I like to feel i had some say in it! but therefore i do feel like i should possibly be sensible now! My asthma nurse speaks to me a lot, just brief little updates on how things are going - she's such a star!! and she *will* listen to what i want, which is the reason i have stuck with her, if i said absolutely no to pred, she'd back off and leave it and actually engage in a sesibe discussion on how i could control my breathing without pred (she obvs tried to fight her corner - but she's not going to try and pull rank on me, i cannot tolerate people who if i am stubborn, they will just say ""well theres nothing i can do for you"" and make me feel like an idiot) but i do think she's deserved a break, rocked up at my monday appt really sounding pretty awful and she so badly wanted me to just go to hosp, but she let me leave, yes i ended up there later that night, but she was really great about it and actually said how she gets that its really good of me to go at all, so she certainly wasnt telling me off for not going sooner! I feel like she deserves a good patient who just turns up and takes the sensible choice of meds :-)

    I also think im ruining other students lives, she says that as i'm still doing my exams she says it feels wrong writing people a sick note when they have a sniffle and dont want to do theirs lol! Plus I turn up all dying and wont let her do much in the way of treatment (my monday appt wasnt actually about asthma so i wouldnt actually let her listen to my chest - out of principle) and then she has people who turn up with a bit of a cough and no matter how thoroughly she listens to their lungs she cannot hear anything dodgy at all! lol! I'm so glad i don't have to treat me! i must be such a nightmare!!

    thanks for the advice. Will see how tonight goes, suspect i will end up taking a few more days, as you say, id rather do 2 more days at 30mg than have to start again at 40mg for 5 days next week (A&E are much less willing to let me negotiate on pred doses! sigh!)

  • Hope things have improved a bit, I would take the Pred its horrid stuff but sometimes to get you through life its needed and its better than a few days in hosp or missing your exams. I had a similar debate with myself today, to use the neb at work and have the embarrassment of everyone check on you or to wait until I could get home to use it. I used it felt a bit better then needed a few more times during the day so made the right choice. This weather seems to be affecting us all, hope your still out of hosp and get some rest tonight Amanda X

  • I hope you are continuing to improve.

    I have had an upset stomach all day (probably due to the prednisone) so I didn't go to see my asthma nurse. I've improved a bit and though I'm not right yet, want to finish my 5 day course as planned tomorrow and see how I feel over the weekend. Depending on how I feel, I'll go back to my asthma nurse on Monday.

    I don't know if its only the bad cold I had 4 weeks ago (which always exacerbates my symptoms and/or tree pollen?

    My hay fever isn't bad at the minute :?

  • well, ended up at OOH tonight, had a chat with the nurse (no docs there - i much prefer nurses anyway) after i was all happy and full of nebs and she basically said that she didnt like prescribing pred to someone who is on their last day of a course of pred, when they arent already known to be on long term pred. Bit strage although i can sort of see her point. Im seeing my GP tommoz anyway (ugh! really CBA) so he can make a decision, its ridiculously frustrating that tommoz is friday, means i have a whole weekend to get through on tommoz's advice! sigh! much easier when we can 'leave it a day and see'. sigh! Suspect he'll want me to do a few more days, one day off aint gonna make a whole load of difference i guess!

    Had a bit of a down moment when i got back from OOH, and the mates i went to afterwards. Thing is, the whole 'early intervention thing made tonight so much stressful, the thing is from me ringing 111 to geetting the few nebs i had was 2hrs, and i dont often get that much time to mess about, and i just had a horrbile ""if i had home nebs, or my GP was more willing to do nebs there then actually i might be in A&E so much less, and actually spend more time feeling well"" moments. I can totally see the arguments against home nebs, but i just wish sometimes that it could be simple to sort things out early instead of waiting till im bad eough for A&E by which time i usually need a lot more treatment. Sigh! But on the plus side, OOH was really great, they were really nice and understanding and totally trusing my judgement, she gave me a few nebs (couple of salb and an atrovent) and then saw me again, said my chest sounded much better but that i could have another neb if i thought that would help, she said from her side of the taable things seemed much improved, but that only I know my lungs so it was my call. So nice!!

    How are we all feeling now then? stupid weather trying to kill us!!

  • I've also found ooh awesome when I've had to go :-) though it varies from that to awful!

    I totally get your point with at home nebs and how it can avoid a&e. I know I'm totally different, I have been offered one (which was discussed at length) and decided against. My cons said that in an emergency I need it to be oxygen driven and that there are associated risks if it isn't, I don't know how great the risk is though! And also I would get into wanting to push it that bit further - I think it would make much more sense for you to have an at home neb than me though. So get the frustration! Is there any chance you could buy your own? I've not looked into it and refuse to lol.

    Your gp sounds pretty good though, I reckon pred will be given. Can you ask for a prescription and about the wriggle room for over the weekend, because then you might not feel as uncomfortable about having to go through the whole weekend?

    Really understand your concerns and reservations, what an awful situation!

    My lungs have behaved a bit better today though the salb/atro, spacer and symbicort have been pretty well abused lol. Pcc happy to prescribe a crazy number of each now though lol. Tight now, but hoping its not enough to disturb sleep!

    Take care!

    Laura x

  • Soph: You are not alone on wanting control and trying to get it by being more involved in treatment decisions. I think it is great that you have an asthma nurse that is letting you negotiate and participate in the choices.

    Wanting control is one of the reasons I am so glad that I have a home nebulizer. The trade-off though is that I have to be willing to update my doctor if I'm using it more than expected for whatever my current level of exacerbation is so he can decide what to do with pred, etc.

    Hoping you improve overnight and the whole more-pred-or-not debate becomes moot.

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