Discontinued inhaler, bank holidays and feeling poorly

First off, sorry for the length of this post, I just need to sound off a bit. I've been feeling rough for weeks, I took a course of oral steroids about a month ago when it started but symptoms only partially resolved. Saw the asthma nurse at the hospital who said to hold off taking another course as exhaled nitric oxide test didn't show significant inflammation and increased my theophylline instead (which still hasn't resolved symptoms). Saw a consultant on Thursday who prescribed Atrovent, except the dry powder form I was prescribed (aerocaps for use with aerohaler) has just been discontinued, although the pharmacy originally told me it was out of stock. Anyway now I can't have that drug as MDI inhalers are no good to me because I react to the propellants so I'm going to try and get them to prescribe Spiriva instead, but everywhere is closed until Tuesday. I'm feeling quite bad yet again tonight and actually close to tears as without the new treatment I'm no closer to getting better. Because of the long weekend I'm kind of stuck, just left to get on with it and feeling rather alone. Sorry for the rant, I'm just feeling sorry for myself and a bit over emotional. If you've made it this far thanks for reading.

21 Replies

  • Nimueh, I'm so sorry you're having such a bad time and I wish I could suggest something that would help you get through this long weekend. Keep ranting, it's what keeps you strong.


  • Hi Nimueh,

    Not really much I can offer except sympathy - bank holidays should be enjoyable, but not when everything is closed and nothing happens - lungs don't respect holidays! Plus it feels like everyone has been away in between the two sets; I'm still waiting to hear back from my consultant and wish they'd get a move on and decide what they're doing/what I have so I can get some medication which works.

    Why did they discontinue the dry powder version?! I can't believe you are the only person to have a reaction to the propellant in an MDI - is the dry powder one considered non-cost-effective, or 'less effective' than MDI, or something? Seems very unfair anyway!

    Keep ranting if it helps - I find a good rant somewhat satisfying. I really hope you get something sorted soon as it sounds like you've been having a rubbish time with all this.


  • I don't really know why it was discontinued, at a guess I'd say there probably wasn't much call for it as it was one where you put capsules into the inhaler device so it's probably a bit fiddly so i suspect most people would prefere the MDI instead.

  • Apparently it was discontinued for ""commercial reasons

  • sorry to hear that nimueh.

    carry on with the ranting i always find that helps ;)

    just a little thought, does costa A+E dept do the atrovent you need? maybe you could try there if yur struggling??

    good luck xxx

  • Thanks Snowygirl but it was a hospital prescription that I was given, and the hospital pharmacy didn't have it. Boots said the manufacturer can't supply it and after a bit of research I found that it was discontinued as of April 2011.

  • I am so sorry that you are feeling so poorly, it is so frustrating when medication is discontinued when you find it helps you.

    I hope you manage to get another inhaler that will help you.

    Take care

  • I've given up and started my pred! My peak flow this morning was the lowest it's been this flare up and then the cat came in covered in dust or something and jumped on my lap which triggered a big attack pretty much immediately (I'm not allergic to my cats it must have been whatever he was covered in). After realising I'd gone through about half an inhaler in just a few hours and I'm still breathless walking from room to room so I decided enough was enough, even if there wasn't significant inflammation before there probably is now so I started the pred. Trouble is now I feel too breathless exhausted and sore to be chasing up the inhaler stuff, but it's gotta be done and the sooner the better. Why is nothing ever as simple as it should be? Ah well, just got to get through tonight and make sure I'm vaguely functioning at 08.30 to book an appointment.

  • Nimueh, just wondering if you managed to get something sorted out with everything opening again? I hope you're getting some kind of relief!

  • I'm still feeling pretty pants to be honest. Salbutamol is controlling the breathlessness at rest but just walking from room to room makes me breathless. I rang the hospital about an alternative inhaler as soon as they opened and was told they'd get back to me, and they didn't bother. I saw my GP (not my usual) this morning as I've started pred again and (understandably I suppose) she wouldn't prescribe an alternative without guidance from the hospital as my asthma has gotten beyond her expertise. So still stuck in limbo, and left to get on with it, with more chasing up than I have the energy to do. C'est la vie!

  • Nimueh, hope you feel better soon. Not in the same situation re breathlessness or discontinued inhalers and hospital. Never felt puffy in shops though or just round Sainsburys before. Know what you mean about long weekend, did feel a bit left in limbo as waiting for ENT appt for sinusitis & doc said no pred until pf 200 and shouldn't increase seretide. Saw asthma nurse today and said so what can I do in the meantime waiting months for this appt and then for whatever they decide to do re scan/op?? Feel a bit more in control now, can double up seretide and know when can take pred etc. Also in a similar situation with their expertise levels but they can call hospital specialists, I can ask for urgent appt with her/GP if needed. They din't think they was much else they could try but would think about it, never been on Theophylline yet?!

  • They're rubbish at ringing back, aren't they? It drove me mad when I was trying to book my first appointment and I wasn't even feeling too bad back then - but they kept not ringing so I'd have to chase then felt like a major pain. Worse when you don't feel up to it and need meds though - can anyone else help you out with maybe bugging them till they reply?

    I feel like the whole NHS has gone away over the long break - like TJ I'm waiting to hear from my consultant about what she might be planning next, and like you GP can't do anything as that's why she referred me!

    Crossing my fingers they get their act together soon for you.

  • Phoning the hospital got me nowhere again today. So I still feel awful, no closer to getting the medication I need. I'm still breathless, my chest is agony in actual fact EVERYTHING hurts especially when I cough. Even if they sort it tomorrow I'll have been waiting a week for something that was considered a reasonably urgent intervention. If I didn't feel so lousy I'd be furious, surely it's bordering on patient neglect now?!

  • That is pretty shocking - bank holiday or not, they ought to have some kind of system in place for things like this so people don't get left feeling rubbish - and especially not if it was urgent already.

    Do you have a range of numbers or just one for reception? Maybe consultant's secretary would work if you have their number and haven't tried - closer to the top and maybe consultant might actually be informed and get things done. It's always harder when you have to deal with gatekeepers who don't think something is important even when they don't know much about it.

    I guess keeping ringing is the only way to get through but sounds like you don't have the time or energy for it!

    On your behalf, and mine and everyone else's, grrrrr!

  • I've already been talking to the consultant's secretary and have a direct number. My fiancé was able to do a lot of the chasing for me today and apparently they were a fair bit more polite to him after he told them he is in fact a pharmacist, but that still didn't seem to help kick start them to sort me out even after he told them that I've been struggling a lot. Really don't know what to do now breathing is not good, but not bad enough to seek emergency care, but I'm not coping well at all with the amount of pain I'm in paracetamol, hot water bottles etc don't even take the edge off.

  • how u getting on now nimeuh breathing wise? pain any better also? paracetamol like taking water havent u got anything stronger ;)

    hope ur okay, sending big hugs thinking of u x x x

  • I'm not really feeling any better breathing wise really still pretty breathless, exhausted and can't stop coughing. I'm still going through my inhalers at a rate of knots which is a bit worrying as normally I'd have started to respond to pred by now.

    Pain relief is a bit of a joke I don't even have any adequate pain relief at the moment for the back pain I've suffered since my teens as my GP decided to take me off my diclofenac just incase it affects my asthma (despite it's never affected my asthma symptoms before) and won't give me anything other that paracetamol saying that my asthma is just too sensitive at the moment.

  • What a nightmare! I hate that 'really breathless but not quite bad enough to call in the cavalry' feeling, and addition of pain must make it worse - afraid I have nothing useful to offer except sympathy which isn't much use really! But you have it anyway. :)

    I expect you've already considered it, but out of hours any use? Just wondering if they'd have different approach from GP (I discovered last week that OOH drs are not all GPs which was news to me anyway, I saw one who was a hospital registrar so maybe would come at things differently), or be able to come up with at least a short-term alternative for the pain? Plus I wonder if it might not galvanise them into action if you're in front of someone and they can actually see you struggling - maybe more telling than you trying to explain over the phone.

    Shocked that you have direct line to consultant and they're still not helping btw! They really need to get off their backsides.

  • Update

    Sorry to bump an old topic but I've not been on for a little while and just wanted to reassure everyone that I haven't fallen of the face of the planet. =P

    Things got a lot worse for me before they got better and I ended up having to call the out of hours GP. Turns out I had reduced air entry into the lower parts of my lungs, which was worse on one side (I forget which) so the doctor increased my pred and gave me some antibiotics and some codeine for the pain. He was talking about admitting me considering the amount of salbutamol I was taking to keep me functioning, but I managed to talk him out of it because my inhaler was helping, I just needed a heck of a lot of it! =P Anyway it's been a slow recovery I'm back to were I was just before that excacerbation, but not back to where I should be. The good thing is we've discovered I can just about tolerate Salamol brand salbutamol MDIs through a Volumatic (I say just about because an equivalent dose, allowing for the strength difference, via my trusty accuhualer still works much better) for that reason I'm trialling the atrovent MDI and so far no major obsticles! =)

    That whole OOH experience does have me a little bit concerned though because I wouldn't have considered going to A&E as I didn't think I was bad enough, yet the OOH GP thought I was bad enough to warrant a night in hospital! Now I'm not sure if I'm leaving things too late before seeking help =S I guess I'll have to ask my consultant about a specific cut off point for when my inhaler is still sort of working but I'm needing more and more of it.

  • Hi Nimueh,

    I'm glad you did bump it - personally I was getting a bit worried since you were having those problems and then just disappeared - problem with this forum is I start getting really worried about people even when I've never met them!

    Glad you seem to have made your way back up a little and found a solution with inhalers. Sounds like some sort of action plan may be warranted so you know what to do when. At least this experience may have given you some kind of baseline for the future and you know that it was definitely serious enough to get some kind of help (though really the hospital should not have left you in this position to start with).

    Hope things keep improving from where you were or at least stay stable.

    Take care xx

  • HI Nimueh, Many e-hugs and crossing fingers for you that all goes a bit better now. Thanks for taking the time to update. xox

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