Just a quick note
Am just waiting for the little green men to come and am off to COSTA !!!!
Can't cope anymore,
Have been back to backing salbutamol and flixatide nebs for nearly 2hrs now and am still really struggling 
Lips going a shade of blue
Take Care All
love and gentle hugs
A very upset and struggling mary
xxxxx
Sending huge Huggs!
Sorry your going elsewhere, hope it isn't for tooooo long.
Lots of love & huggles
Kate
XXX
Sorry to hear your so poorly maryh,
Perhaps costa is the best place for you right now.
Take care,
Derek
so sorry mary, praying for you.
xxxx
(((Hugs Mary)))
Hope ur breathing easy soon!
Shadz xxx
HUGGLES !!!
Hello Mary,
Hope you are doing OK in hossie this morning.
Lots of love and hugs,
Mia
xxx
how on earth did you manage to post quick enough that the green men hadn't got to you when your in such a state?
Its an erm... achievement... i guess
Mind you i always remember you posting very coherently when ""just out"" of ""ITU""...
good luck with it anyway
Take care Mary. Hope ure doing better this morn.
xx
Hope you're feeling a bit better now, Maryh.
Anybody needing to back to back Flixotide nebs (they're yeuch and gungey too) must be in a really poorly state.
Sus xx
Hope you are feeling better now MaryH. I am normally so ill by the the time I get the greenmen simply breathing is as much (and has been less) than I can manage kudos to you for being able to type.
Does b2b flixotide help? I thought it was preventer can you do it b2b and get benefit from it? I am curious to know cos anything that helps has to be worth a try!
Bex
I'm intrigued as to why you're on them and ""top whack seretide"" too?
Mary, so sorry to hear that you're in again, hope you feel better soon! Sounds like you've seen too much of the green men recently
Bex, I was wondering about the back to back flixotide as well! Thought perhaps I was being stupid but I can't see how it would help in an acute attack? In the end I wondered if Mary meant to put salbutamol and atrovent instead, after all as you point out most of us are not in a fit state to think clearly let alone post clearly by the time it gets to green man time!
Mary, please enlighten us if I'm doing you an injustice?! 
b2b atrovent for 2 hours would be bad news too. They once let me b2b atrovent in A&E for an hour (SHO rotation time) and boy oh boy was ill on it.
Bex
Yes, also enlighten us on why you're on flixotide and ""top whack seretide"" too? have you checked that one?
hi
feeling slightly better now !
amino levels where in my boots ( 7 ) but after iv amino they are back up to 12 and my blood gasses where 93% last night but r now upto 96%.
thanx for all ur well wishes.
what i ment was i was back to backing salbutamol and saline with 2hrly flixotide sorry i was typin in a rush last night.
Jenna > when u have been a chronic brittle asthmatic all ur life then u learn to cope with ur illness and try and live a normal a life as u can,
maybe what u call a bad day for u is just a normal day for me, everybody is differant !!
i have been in and out of hospital all my life so it is normal for me, it isn't unuasual for me.
as for the question about the flixotide and the seritide - i have seretide 250 inhaler and have flixotide 2mg/2ml nebs why is that a problem ??
they are wot my cons put me on so unless ur some sort or doctor / cons /nurse i don't understand why that is a problem for u. none of the above see a problem with it.
like i said early everybody is differant and responds in differant ways
take care all
love and gentle hugs
mary xxx
not a problem at all just wondering, seeing as they contain the same drug. seems bizarre to me. Flixotide 2 hourly u said? u find it helps?
I'm a brittle too so i do know what its like, what i meant was I physically wouldn't even have the time if id dialled 999! but i am... impressed... lets say.
Hope you are feeling better mary, as to be able to type while waiting for green men i to could sometimes and im also brittle it just depends on your warning signs and how quickly you respond to them, some people sit a wait some get help asap, as you said evey asthmatic is different. And as for the last comment on blood gases both o2 and co2 are as important and taken into account for your treatment in there own way not one favours the other.
Andrea xx
Ding ding ding...
I've stepped in to ring a quick bell and defend Jenna from next punch. I knows she is truly really and absolutely somebody with top end terrible brittle asthma.
999-forget it. Mid attack it would be shake shake shake or gasp gasp gasp, certainly not type type type, or even typo typo typo long complicated drug names.
I am on top whack Seretide 500 (2 puffs bd) and also have flixotide nebs. They do absolutely nothing in an attack, as we all know 
Thanks for clarifying that, Dr EmilyH. I have a supply of them for when I have needed to boost the Pred, or to help me get off it quicker. Back of cupboard jobs now hardly need to touch them if I can help it.
Erm, a word of sensible warning here, Guys. Back to backing anything ( if that's your protocol) other than Vent isn't good news if you are that bad. Why back to back saline? Surely it is only diluting the vent and making it work slower. If one is so critically ill that 999 has been called, then there isn't time to sit back and enjoy the therapeutic effects of misted saline up one's nose.
Erm, IV Amino is given for 7-10 days in my hospital (RBH). It never works quickly with me. My last IV of it was for 3 weeks! And a level of 7 is damn good for a lot of people. In fact we were discussing our levels and how much longer it takes to work then IV vent over on another thread.
Erm, Maryh, did you mean SATS, or were you really quoting your Arterial Blood Gas figures, cos your costa sure does it differently. If your SATS were low 90s you would have been hooked up to 4 litres of O2 via nasal prongs for a good day or two.
But I know everybody here will be joining with me and saying congratulations on such a swift and uncomplicated recovery. It appears it has been miraculous. My Cons would love a patient like you-very text book. In that state most of us would have been incarcerated for weeks if not months. You must be very fit or very strong to bounce back like Zebbedee.
Please can some of us have a bit of your Boing?
Enjoy being back at home resting. Oh sorry, are you still in costa. Wasn't sure. You are so lucky to be allowed out of bed on IVs to post.
I think what Jenna and I meant was being brittle (well speaking for myself) by the time I know it is going it is going to be a bad one and not able to treated at home ie b2b nebs have no effect we would be pretty much flat.
I am seriously interested in the 2 hourly flixotide does it help? I am only asking cos it might be worth me mentioning to the RBH next time I am there, anything to keep me out of costa, cos once I get there it seems to take forever for me to get out again.
My amino levels are currently 6.3 and like Sus we are talking a good week or 3 on IV to get them up to anything approaching sensible and that would be on 2 grams of amino over 24 hours, yes I know it is a lot but the RBH do things no-one else would dare (at least that is what they tell me!), local coasta won't do more than 1.5 grams over 24 hours.
I am glad you are feeling better Mary, being able to get to your costa before you splatt big time must make treatment so much easier. I wish I ""went"" off in a more organised fashion, would make it a lot less scary for the kids.
Bex
Hey Bex, glad you're home safely. OMG 2 grams! I can only tolerate 1g of the stuff, dripped really slowly else I splat. Maddening stuff, isn't it. 43 mls an hour over the 24 hours I think.
They put it up to 1.3g and I hit toxic extremly badly with a level of 20 but was practically comatose. Never again. So they always stick at 1g for me and it is written very clearly in my protocol should any other costa be unlucky enough to have to give it to me, as I also have to be shot up the line with metaclopramide TD to stop me pebble dashing my hospital bed!
Maryh- what dose of IV Amino and what drip rate were you put on to get your level up that quickly?
BNF States
Nebules® (= single-dose units for nebulisation) fluticasone propionate 250 micrograms/mL, net price 10 × 2-mL (500-microgram) unit = £9.34; 1 mg/mL, 10 × 2-mL (2-mg) unit = £37.35. May be diluted with sterile sodium chloride 0.9%. Label: 8, counselling, dose, 10, steroid card
Dose By inhalation of nebulised suspension, adult and child over 16 years, 0.5–2 mg twice daily; child 4–16 years, 1 mg twice daily
I know RBH & some Cons prescribe over the limit to some people but no a drug to mess with unless it is clearly stated and agreed by both cons, gp and patients when the ppossible dangers have been clearly stated and agreed.
Bex don't get too excited about the flixotide Debbie had me off the pulmicort nebs quick smart said rbh did not think steroid nebs of much help and if on pred then only added to the steriod load and less better than more. Have to say it has been great such gunky things but was on seretide 500 on top of the pulmicort too for a while so both is possible. I think if they made steriods to be given by any other routes I would have tried it!!! I will leave you to ponder on that one !!!!
Den
Come on will you lot lay-off maryh !!
Every one of us is different and go-off or copes during attacks differently!!
Now a member (in fact a few old members) on here before the forums software was changed KNOWS me knows I am real and how bad I am or I get!!
And I tell you something being constantly asked to PROVE something is insulting!!
Which I ""STILL"" get on these forums now!!
And now ""I feel"" in fact I can read its happening to MaryH!!
There is one *old forum* girl who I can talk to on msn and SHE can tell by my typing IF I am heading elsewhere!!
And I can tell you now (BLUNTYL) that if it hadn't of been for her making me go in (and I ended up in over 10 wks that admission on IV Bricanyl, Iv Hydro, Iv Mag, and 6 litres o2) I be dead !!
And that was all done via typing on msn!!
But due to my plan I don't or won't go in till I really have too !!
Cons and my medical team KNOW this!!
And have even been talked (typed more) into going in via msn MANY a time!!
But there are those people who *KNOW* when they can’t cope and to be brutally honest WOULD go in long-before I do!!
MaryH *KNEW* she couldn't cope and posted she was going in!!
She was sensible to go in when she KNEW she needed too and to be honest I cannot believe some of the responses to this thread!!
You all keep saying we are ALL different in how we are treated, cope or go off!!
So why not remember that and lay-off people who DON'T fit your own expectations of how this illness/attacks should affect them!!
And I am saying this as I've been in the position on here that maryh is now being ASKED to prove stuff (and that’s exactly what is happening) and to be honest I'm sick of it and so are others!!
REMEMBER WE ARE ALL DIFFERENT!!
How very Silly people can be ................
wot silly pathetic ppl some of u are !!!
I am not going to reply to any of u statment as to be quite honest i don't think any for them are worth the bother !!!
I don't have to prove anything to any of u at the end off the day !
Will repeat again tho EVERYONE IS DIFFERANT AND RESPONDS TO DIFFERANT TREATMENTS IN DIFFERANT WAYS !!
As for the coment ""very text book like"" then u must be more educated than my resp nurse and my cons !!!
as my cons and nurse who have degree's in asthma don't seem to think so !!!
Well that is enough of wasting my time with some of u on here
so take care and those of u who r ""brittle"" as u say then then u don't understand very much ......
when u have been on a lot of medication all ur life then words like flixotide and salbutamol aren't complicated words.............
Also i am not only a severe chronic brittle asthmatic i also have endometriosis on my lungs !! just incase u want to look that up too !!!!
Wooooha hold up there. First no-one said you did not have cronic brittle asthma. Like many here I am constantly on a quest to find better ways of treating asthma. My question about flixotide nebs in a accute situation 2hrly was genuine. I am not above suggesting or asking even the proffesors at the RBH if it worth trying X. I asked about Bricanly tablets rather than sub cut cos they had been mentioned here.
I had endometiosis and fibriods which resulted in a total hysterectomy 10 years ago so I know how horrid it is.
Unless we exchange ideas and treatments here how are we ever going to get consultants to think out of the box. Sometimes they get so set in their we do it this way ideas they forget there are other methods out there!
When people ask how or why don't automatically assume they are questioning you I don't.
Bex
ps I could take Sus's comment about 2 grams of Amino as questioning or disbeleiving but a) I am sure that is not what she meant and b] even if she was that is her look out not mine. If you see what I mean....
I know how it feels
Yet again someone posting has ended in slanging match. This is the first time I have posted for ages. I thought this was supposed to be a supportive place where people may understand. Well thats what I thought when I first posted. I just stick to reading it now. Some people seem to question everything because it has never happened to them. There are exceptions in everything. No one believed anything I wrote. So how about being more supportive
hi guys,
can i please just ask everyone to take minute and let go of this.
One of the problems with a board like this is that we are all struggling, which means we all have some sort of problem with either expressing ourselves verbally, reading other peoples posts as they mean them, or getting upset and angry when it wasn't anyone's intention. i'm not gonna get involved in backing anyone up... you're all much more ill than me, and i don't pretend to know anything about your protocols (thankfully my neb is emergencies only.. if one (2.5mg salbutamol) doesn't work, then i'm off to A&E. i know lots of other people here wouldn't bat an eyelid at my level of breathing problems!)
please, please everyone just resist the urge to have the final say on this, it just makes people bitter, and angry, when all we really want to do is support each other. I fully support people asking questions about treatment, but remember guys, we're only working on 30% communication here (because we can't see each other) so its easy for misunderstandings to happen, which is the only reason we seem to have arguments.
take care guys, i hope you recieve this in the loving spirit that its meant.
love,
justy. xxxxx
Please remember everyone is different!
Brittles can be chronic and / or acute and we can cope with a lot more symptoms and still semi - function during a chronic deterioration! We have to or we wouldn't do anything.
There are alot of different thoughts about treatment of difficult asthma.
RBH have their protocols, Hertlands have theirs and also our own hospital consultants may have their own ideas about heavy duty doses of meds!
I know from experience that some very difficult asthmatics are prescribed HUGE doses of oral, inhaled and s/c or IV meds to atempt to control their symptoms.
Please can we listen to people and think carefully about what we say here.
Thank you
Kate
As far as I'm concerned it IS over. We've all said what we want now can we leave any comments either good/bad/indifferent and just stop the posts on here altogether?
There really is no point in going over old ground over and over again. It's clearly upsetting the wrong people.
Bex hun if you're still interested in flixotide perhaps starting a new thread on here is the best way forward?
That comment of mine was genuine, i really am interested too. Although the comments ive had off consultants re. them have been very mixed so far, which is very confussling :s
Flixotide nebs
I am so daft I don't know how to start a new thread....did I really say that!
I have some, stashed out of reach in back of cupboard.
I was majorly ill and very Predded out last Autumn and was given them by con at local costa to try to see if it made a difference to the gunk situation I was suffering from and the fact that I was on 50mg pred.
They didn't necessarily help as I didn't at the time know how ill I was with various infections, not just asthma inflammation. This was the start of a very lengthy grotty spell in hospital.
I had to buy another neb machine, they ruined my previous workhorse neb. They are tiresome and gungey to use and don't taste too cordon bleu either.
RBH don't really hack them so Bex, you are possibly unlikely to get them there, unless there is a genuine possibility that they will help you reduce your oral pred, although I hope your s/c will let you do that 1st and foremost. I think hat was Den's comment earlier as she was told to ditch hers by same team as me at RBH.
I think if you are in the situation that I was in, with so much gunk you feel you are drowning, there is a possibility you could be able to try them, but they're not good news for your neb machine as you need a sidestream system, blah de blah.
~But...as countless others have said before ...nothing ventured.... so do ask away.
And on another note...can I second what Jenna has said and throw in my proverbial towel too.
Let's all be careful what we post here, to whom, and how we say it.
Myself very much included in that statement.
Sus xx
A message from a moderator!
Is this all over, folks?
Blimey, I go off on holiday and look what happens...!
As a moderator and unconnected party I have to say that there seems to be a problem here, but it doesn't seem to be people who are inquisitive about treatments. As Bex has put it, if we don't ask we might miss out on a treatment we haven't tried but which might be beneficial. But we must also be aware of the fact that it is safer to be cynical than to believe everything that you read on the Internet - and this applies everywhere, not just here. If you are one of the many people here who has unusual treatment plans or similar, you should be prepared to answer questions about them. 99% of the time these will be genuine queries by other interested members, and you may be able to provide useful advice to them about their asthma. Don't immediately assume that you're being accused of falsehoods!
And yes, we all need to remember that everyone is different. We must also be aware that there is a world of difference between ""different"" and ""medical impossibility"", and that a number of our members are medically qualified.
Right, I'll now take my moderators hat off and hope that this is the end of this particular matter as far as all parties are concerned.
Respiratory Consultant wants me to come off asthma meds!
Can Montelukast cause thick mucous?
steroid inhalers and oral thrush 
recently diagnosed asthma
Late onset asthma confusion 
