Been hitting the neb a lot recently as asthma is being an absolute pain after this virus and doesn't want me to do much and if I do go out will end up nebbing with the portable (inside get the beast out). (in the interests of promoting good asthma behaviour and discouraging any promotion of neb abuse: I have kept my asthma team informed of how much I'm using it and been in to see them but doesn't seem to be much they can do, especially given I don't really respond to oral steroids. Quite frustrating!)
This means I have officially got fed up with the case Omron gave me for the U100. The spare batteries and nebs fall out when I open the case as the pocket isn't zipped - drives me crazy and makes it hard to use while out, which kind of defeats the point of a portable. The cable/accessory case I got for the Beurer is ok but still lacks zipped pockets (seriously...why is it so hard to put zipped pockets in? I would want that for cables too!!)
I therefore went on a hunt, and have found 2 pencil cases on Amazon which seem to fit the bill. They have actual zipped pockets and compartments so I can open and use the neb without needing to be an octopus and chase nebs and batteries etc round a dirty floor when I can't breathe well! I'm sharing them here in case anyone else has a similar problem - it took me a while to find these.so hope I can save others some searching! Obviously they won't fit all nebs but I find there's space for neb, mask, mouthpiece, spare batteries, nebules and cleaning wipes (I wash it properly at home but carry wipes for a quick clean while out).
I kept the smaller one for the Omron for smaller bags; the bigger one fits both the Omron U100 and the Beurer IH55 (has a big rigid mask and a charger cable - all fits - see pic).
Disclaimer: not yet used them while out.as they have just arrived, but tried at home and found things aren't falling out and I can set the neb up more easily using the case.
Hope ok to post links - I know nothing about this company other than that I found them on Amazon so I'm not promoting them or anything.
It fits my Innospire Go nicely plus a small microfibre cloth because of the post neb drippage (of the nebuliser!) and a little zippy purse that I put my nebules in.
I agree about the Omron case - when I was using it (before the second one became temperamental and I gave up with it) the stuff kept falling out of the case it comes with. Quite annoying!
Ooh that's pretty! Now eyeing the one in the style I got but that material...no, I have one lol, don't need more!
Used to love getting a pencil case for school - the It case in about year 9 at my school was wetsuit material surfer style, but I preferred them less sporty like this.
What a brilliant find, I also have been floored by the after effects of this virus. It's really nasty, one moment I have energy the next I don't. It's been 2 weeks so far, now in the start of week 3, my H has been unwell with it for 3 weeks, fortunately he's not asthmatic. Going out in the cold air triggers an attack so I've had to use my neb whilst out.
Sounds tough not responding to oral steroids. I have had to go on 60 mg reducing dose (now at 50 mg) in order to improve my peak flow but it's still not in the green zone, hasn't been since last August. I have never been on more than 40mg before. It never really got my peak flow up to the green zone, maybe I needed a higher dose for longer, it's something I'm going to ask my consultant about when I next see him. I was discharged from hospital on up to 4 nebs a day! Complete change from before. One neb go to hospital. My GP knows about the use of my nebulizer and I am going to get reviewed when the dose of steroids has reduced further.
I have an Omron Microair U22 which I use with an angled mouthpiece, it's not designed specifically but I find it helps in that I don't flood the mesh as I can keep the neb more upright.
I just keep it in a plastic food bag with nebules and a spare mesh in my handbag. I have a smaller hand bag so I don't have too much weight, makes a difference when having an asthma attack. I also keep a supply of spare batteries and a packet of travel tissues to clean up any neb residue. I never bought a mains lead for it, maybe I should.
I like the idea of a small case to keep everything together. Thank you all for posting the links. 😊
HI, sorry to hear you've been struck down by the virus too! I also found it very up and down when i had it; now just dealing with asthma as the aftermath which is very tiresome. I find going out anywhere seems to make me need to neb, and sometimes just sitting inside too. Hope things improve for you soon and your husband also feels better.
With the pred, do you find it helps even if you aren't getting into green? I ask because I was on pred for ages and at one point thought it helped, partly because I always seemed to flare more when I got to below 20mg. But then I increasingly found it didn't do very much and I was able to come off it without it making much difference. If I have an attack it doesn't seem to make any difference if I have pred; I'm still unsure if hydrocortisone IV maybe helps, it's hard to know. But I'd probably still be on the pred if my current consultant, who HATES steroids, hadn't tried this, so I sometimes wonder if there are more steroid-resistant people like me trying ever-higher doses of pred. I appear to have a weird type of asthma that's primarily non-inflammatory, which hardly gets acknowledged as even existing a lot of the time. Asthma flares are still measured by needing systemic steroids, which I find annoying as it's rather as if I don't even exist, or 'can't be that bad' because I don't respond.
Of course, this may not be you - you may just need a higher dose than is 'usual', and sometimes people do find that systemic IV steroids during an attack help more than pred, even though we're often told it's the same. I have seen some discussion at a scientific conference that actually it's not, though now can't remember where that was.
I have to admit I've been a reluctant prednisolone taker. Since a bad attack last August my pf has been in the amber zone. I've had a few 5 day courses of 40 mg which helped a tiny bit but were not enough to get my pf back in the green. So I was having difficulty but had got used to the tight chest, wheezing when I walked and being triggered by my usual triggers.
It's taken this virus where my pf dropped to the red zone and my GP putting me on the 60mg tapering dose. Last night was the first time my PF has reached the green zone, it had dropped this morning but I've dropped down to 40 mg of prednisolone this morning. So it seems I need a high dose of steroids to improve my symptoms. My airways feel much more open than they have in months. I'm going to have to see how it goes with the prednisolone reduction.
I feel like my airways are still very twitchy, I'm avoiding going out unless I absolutely have to. My energy levels are non existent but I think this is normal after a bad attack as well as the after effects of this virus.
My consultant at Barts is in the process of diagnosing what sort of asthma I have. I don't have oesophillic asthma, had that checked over 10 years ago at the Royal Brompton hospital. I still don't produce oeseophills, my blood tests in hospital confirmed this.
I know what you mean about not having typical asthma. My oxygen sats don't drop during an attack (I compensate really well), but my carbon dioxide levels go up. So I cope well until within minutes I will suddenly crash. Silent chest and semi conscious. This has happened numerous times over the years, salbutamol nebs reverse it if I cough and stuff shifts thankfully. I've had to explain this to Dr's in A&E via my written asthma details, I shouldn't have to educate Dr's, especially when I'm not well.
I'm going to have to bring this up with PALS as well as the bad hospital experience I've just been through. Hopefully the process will improve things for other asthmatics too.
Sorry to hear you had a bad experience - I find that lingers with me much more than the asthma itself, and it really doesn't help at all being atypical! I had a brief admission with this just after Xmas but they were mostly ok, other than as usual ignoring the asthma team's recommendations.
I also have a summary because they don't get it otherwise - sometimes don't even get it with! I seem to tick all the weird boxes, and probably have some kind of non-inflammatory asthma but with the odd weird inflammatory marker, yet no longer a response to pred.
Best of luck with working it out with the pred - does sound like it's doing something then! Do you find Barts good with atypical/non-eosinophilic asthma? I didn't get on with RBH and my current one is better but I find rather into FENO. Bronchial thermoplasty was mentioned but I've not heard more so assuming it's been shelved -I wish they would tell me when they decide not to do something instead of leaving me hanging. I've kind of given up with getting anywhere now to be honest, it just seems to be a bit pointless and not really worth the effort and what it does to my head to try.
Oh yes I get the Dr's not getting it despite it being on paper. I'm going to ask my consultant to write a letter that I can show the Dr's if needed.
My consultant at Barts is really thorough and is a severe asthma specialist. He thinks I probably have severe asthma, I was diagnosed with brittle asthma years ago. But he needs to go through the various tests etc I guess to confirm.
I found the Royal Brompton wasn't for me so I chose Barts hospital this time round after a recommendation from a friend. This consultant listens and is open to the fact that some people are not like the text books. I asked my GP to refer me to Barts directly. It is worth asking for a referral. Their approach is very different to the Royal Brompton.
My PF has dropped since this mornings prednisolone drop. So it looks like I'm one of those people who needs high doses of steroids. I'm going to have to go back to my GP about it. 😫
How to you get the medication to put in the nebuliser? My daughter has difficult to control asthma and we have either been called an ambulance by the gp of called one to home half a dozen times in last six months. I asked her consultant if we could have a nebuliser for emergencies but he said if she is that poorly he wants her under medical supervision. My concern is the wait for the ambulance may one day be too long.
HI Dawn, sorry to hear your daughter is struggling! Unfortunately a lot of UK doctors do feel that they don't want asthmatics having a neb at home due to the risks, as your daughter's consultant has said - not saying you or she would do this, but there is often a risk that people can keep relying on the nebs too long and then they stop working. Then you need more treatment asap, but you're not in a hospital to get it. I don't know how old your daughter is but I can see that especially going for children.
It took a few years of having difficult/severe asthma before I got mine and I didn't think I would as my consultant is not one who usually likes people having them for the reasons above! I was surprised when he suggested it, but it was 3 years into seeing him and I think he felt he had a better idea of how my asthma presents and how I behave with it ie that he didn't think I would just keep using nebs. I have always been very careful to not overuse them and to inform my team if I am, since I don't use them every day normally -these past few weeks have been very unusual and I have made sure they know what's happening.
If you think there's a concern about the ambulance taking a while you can only keep on raising it with your daughter's consultant, but I suspect it will be a difficult one to persuade him, apologies!
Yes - I went to them and showed that my consultant approved it and they now supply the salbutamol nebules.
Surprised yours expire so quickly - mine all have a date at least 2 years in advance which should be fine, as I wouldn't reorder if not using! Maybe check with the pharmacy/GP on this?
Thanks for that and it does make sense. She is 18 and only started with Asthma at 17 so early days for us. We now have a pattern that when she gets down to 6mg steroids she is ‘waiting ‘ for an attack and as soon as she starts to feel it we up the steroids so with time I think we will manage it better.
She is on mepo injection and was hoping this would get her off the steroids but it doesn’t seem to be the case.
Yes I can see why he wouldn't be keen for her to have them at this point! Sorry to hear about the mepolizumab - it seems to be great for some and not useful for others. Hopefully she can try one of the newer ones if it's still not helping so much - it seems some people get on much better with benralizumab, and there are also two others which may be options.
I have rather weird asthma and waiting for them to invent a biologic for me lol - on the plus side I don't have to deal with steroids I guess.
The consultant did say he is considering changing to another injection as mepo hasn’t really done what he had hoped. She did get the mepo fairly quickly, I think we are lucky to have a great consultant who is keen to see her back at college as she is so young and often so poorly.
He does sound really good so glad he's on the case! 18 seems like a really bad age to be ill like this what with exams etc. I hope she finds something that really works soon so she can get back to college and not have asthma disrupting things.
You need a doctor to prescribe the nebules which as prev stated they won’t do with a lot of asthmatics for safety reasons. If you’re controlled and only really treated in the primary setting (and only have asthma) you shouldn’t need a home nebuliser. Good ones cost from about £80-£150 (off the top of my head). Hope that helps explain things a bit
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