Over my time on the forums noticed the same questions are coming up over and over, to me this means somewhere along the line there is information missing from leaflets. So in my bordom going to create a a new guide answers all those stupid questions you don't want to ask but want to know the answer for.
-What is an attack
-What is the BTS guidlines and where do i sit?
-Side effects of salbutmal and inhaled steriods
-When should I be referred?
-Asthma terms
What other things could be inculded???
27 Replies
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i have noticed few people asking when to take their reliever
x
Ohh I forgot that....
Thought of something else I am big into the whole excerise thing
Also was gonna add bit about co-mortbailities ie hyperventilation syndorm/vcd
Pred. red vs white
P.S. Good idea, Asthma UK info not specific enough on details sometimes
what a really good idea...maybe you could write a book...
terms such as preventer and which drugs come under this title, there seems to be so many...
Also a survival guide to being admitted to hospital would be very helpful as I know that the first couple of times I was petrified and would ahve loved what was happening and what to expect to be explained to me. I kniw that not everyone has the same experiences but just a general guide.
Would have loved such a book to show my employer
I think the guidelines would be good and I know SOuthampton Gen as well as other places have developed simpler flow chart type ways of trying to show it. My main thought though is that although this give general guidelines, how many of us fit it perfectly?
Also someone said about difference between e/c pred and white pred but what about the bubbly pink ones?
Explaining what FEV1 and PFER and methacholine challenge and bronchs, washes and biopsies and saline tests and all these things are and what the consultants are looking for when doing these. I know that it took me until I was about 24 to get the nerve to actually say 'Excuse me but could you tell me why you're doing this and what it is going to tell you?'
If you are on steroids, inhaled or oral what should you be doing to take care of yourself, how often should you have bone scans, when should you take extra bone care? When should you carry a steroid card? One I had a few weeks ago that I have never had to consider is taking extra steroids to get through stress/shock of surgery and how much and for how long?
Though tI only had one thing to add, sorry if I have gone on, memeories of times of confusion and not having a clue came rushing back!!
This is a great idea Bizkid.
What about something to say not everyone wheezes and PF isn't always as predicted - can be higher, lower etc so should go more on how you feel? Have noticed this coming up a lot and perhaps helpful to emphasise that people should go on personal best and not wait for it to drop if feeling bad, as lots of general asthma sites out there often treat predicted PF/wheezing as a kind of absolute thing, I don't think AUK really covers it specifically and if people are new to asthma they might not know about individual variation.
Also, and I think this may have been discussed on the boards as I went looking for it, how to tell if your MDI is about to run out (the floating test)?
That is a good idea- glad you volunteered to do it though!
After looking at other people's suggestions I wondered whether some of the things mentionned would be covered when Asthma UK do their new info on severe asthma. It might be worth checking- then you could just do a link.
Theophylline seems to come up a bit, some people seem quite worried about taking it.
Err that is all I can think of at the moment.
Bryony
Just an aside following Philomela's post :).
It's not possible to judge if an inhaler is empty by shaking as the spray carries on working for a while longer after the number of doses stated on the pack.
The ""floating"" test was popular for the old CFC inhalers, but usually for the new CFC-free inhalers there's an instruction somewhere in the patient information leaflet *not* to immerse the canister in water.
So if the inhaler doesn't include a counter (Serevent and Seretide MDIs have built-in counters) then prime the inhaler by releasing the required number of puffs as stated in the patient information leaflet before first use ... and then start counting perhaps in a diary, marking off a grid on paper, or by using a mobile phone app.
However, it's easier to keep track of when to change a preventer inhaler ... divide the numbers of puffs per inhaler by number of puffs used each day. Some preventer inhalers are supplied as 28 or 30 day packs if using standard doses which makes things easier.
Apologies to Bizkid for the deviation :).
Out of interest does anyone know why some inhalers have counters on them and others do not? Is this because they are made from different manufacturers? Or a cost thing... Thanks...
PS Wish they all had counters as it would make life easier as there would be less unpleasant surprises when at the bottom of the inhaler...
Yep, had the empty ventolin problem earlier. Still puffing but not helping, was lighter when compared to new one.
Good thing I mentioned the floating test as I didn't realise you weren't meant to do that with the new ones (should have looked at instructions) - I'm very grateful Ginny that you pointed that out before I immersed my inhaler in water and totally ^&*() it up - not that it would make any difference for all the good it does me
Is there any way to tell how full it is if you haven't been organised about keeping a diary? I use mine rather sporadically because I don't think it really works for me, and have not been great about keeping track, but I don't want to run out because have an idea it may work a little at least.
Sorry Bizkid for keeping this side-track going. Think your point about the co-morbidities/alternative diagnoses like VCD is a great idea, sorry can't think of anything else to add (I had a suggestion about referral but then noticed you'd covered that already).
Have just figured out an easy way of checking. D'oh, don't know how I didn't think about it before as the solution was right in front of me. Weighed an empty and a new Ventolin MDI/evohaler on my digital kitchen scales, there's 10g difference - empty 30g and new 40g. Just realised several others are gone too, lucky I have a few new ones Happy days
Anyway sorry Bizkid, how's ideas for your guide coming along?
Sorry TJ, but are your electronic scales sensitive enough to weigh single puffs?
Just asking because if there are 200 puffs in a Ventolin canister *and* if a canister is 40g when full and 30g when empty then that implies there are 20 puffs in each gram.
So therefore 1 puff would weigh 0.05 grams!
For safety, the scales would have to show the difference between a canister weighing 30g and 29.95g in order to measure the 200th and 201th puffs. That's before considering the error in the measurement as there will be some variation between readings taken using different scales of the same make and model :).
My electronic kitchen scales are only accurate to the nearest 5g and it's hard to imagine sufficiently sensitive ones (for purposes of weighing inhaler canisters) being sold for measuring stuff out for cooking.
Probably the safest thing to do if you're worried about an inhaler being nearly empty is to keep it for home use only (evening and nights?) where you can easily swap it for a new one if needed.
Edit: Malawi, US Ventolin inhalers do have counters but they're probably more expensive?
Ginny
Just meant it as a rough guide not to the nearest puff & my scales are accurate to within 1g.
Sorry TJ - kitchen scales just sounded very approximate on first reading!
No worries Ginny
Getting back on topic, perhaps add to the list:
What is an Asthma Action Plan?
And how to get one, as no medical professional ever seem bothered to write one in my own experience. Was last told, 'we don't have a plan of action so what is the point of writing an action plan' Hmm? Ok?!!
Is it like a right of all asthmatics, every says it is everyone elses responsibility
I have never been issued with an action plan consultants tend to seem to assume you know what to do... which to be honest is okay if at pred and antibiotic stage where have to see GP ... after this is normally a and e. Hate it when changing medcines and inhalers as have lost the ability to step up seretide as on other off license doses of steroid inhaler. Which is what I have got used to doing... have to say do not like being in unkown teritary where asthma treatment is concerned.
Getting some good ideas going, Im hoping to aim it more to mild/moderate asthma anyway.
Im writting these ideas down, some think I will use but I think some such as the action plan is abit personal and I dont want to end up giving medical advice, I dont have one. But going to put in alittle when should go to ED and GP instead.
Going to go through the tablets and list the common side effects with the inhalers, listing normal doses and if its steriod or LABA
We are thinking along the same lines Bizkid. An Asthma Action Plan can only be filled in by an asthma nurse or GP. It is a personal self-management plan and includes instructions on when to see a GP or go to A&E. Not everyone knows that they exist or where to get one ... and most people probably don't have one (I don't). However they are very useful for newbies and people who are unsure about when to get help or who have poor control.
It would involve no medical advice, just an introduction and a link to the page on this site where you can order an AUK Be In Control: Personal Asthma Plan to take to an asthma nurse or GP to fill in which should be suitable for most people be treated in primary care.
""9.1 Self-management education and personalised asthma action plans
Written personalised action plans as part of self management education have been shown to improve health outcomes for people with asthma. The evidence is particularly good for those in secondary care with moderate to severe disease, and those who have had recent exacerbations where successful interventions have reduced hospitalisations and emergency department attendances in people with severe asthma. A consistent finding in many studies has been improvement in patient outcomes such as self-efficacy, knowledge and confidence.
I think the title is a bit insulting... ESP for people coming to terms wie asthma as a diagnosis. They have loads of questions and the aim of this site was to offer support in a friendly environment not to
Be labelled dumb
Gussypoo, I may be wrong (and you are right that people would not want to be labelled dumb and are after answers and friendly support) but the way I read it is just a take on the series of books 'A Dummy's Guide to...' - I don't think Bizkid was calling anyone dumb!
I dont buy those books for the same reason,I ain't dum to have a question and why pay to Be insulted,
but when presented with a new diagnosis and u have a 1001 questions that ur nervous to ask. Not the best way to evoke confidence in someone to ask questions Or seek clarification. Tho the aim
Behind the post is good maybe a better title
Might need a new title anyway. Someone beat you to it.
PS be aware that my computer puts a space that isnt there in the address.
Yeah the title of thepost wasn't going to be the title of the book abnd no way menat to be saying you are dump but that series of books are used to explain things in simple terms hence why I used it.
Bumped for jaffacake with post on 'counters for inhalers'.
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