not sure of new treatment plan :S

captured by green men /women again this week in Costa del NHS from Mon til today ....

struggled to increase my peak flows and change from nebs to inhalers ... you know, the usual ...

more SOB than usual and needed oxygen longer than usual as well ??

CXR showed infection that i was treated for last week, not cleared and also new changes, so new course antibiotics - again! which am still taking on discharge home today, and need repeat xray in 4-6 weeks time.

started on amoxicillin, yet i NEVER respond to it, if anytthing it makes me worse, which i told them 4 times, they never listened, kept dismissing me. i kept saying i always have to have augmentin +/- clarythromycin. luckily i have a stock of augmentin at home!

also, was local hospital as bluelighted to resus - AGAIN! so they liased with my resp consultant, new treatment plan which i am not convinced about...

1. wean pred 5mg per week until stop.

2. not to restart pred unless PF <200

3. continue on ciclesonide inh at double dose

4. salbutamol home neb PRN for emergency use only

**my best PF 550 so i am concerned bout not restarting pred <200 and also everytime i wean down pred i end up readmitted to resus :S argh!! so pleanty to discuss at next appt on 24/3 grr!!

at least everyone agrees on my individual emergency plan! haha

x x x

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I've had that happen before too where I know the ""usual"" amount of pred. will not work for me.

When that happens I usually call up my asthma doctor or go to my GP and see if they can give me a slower taper. Usually they are helpful if I explain what's worked before and how my specialist usually does things. Could you call up your asthma nurse and ask if you can try something different this time?

I really hope things work out this time. I hate not being able to breathe sometimes...most of the time I don't mind too much...but sometimes it's just miserable! Oh and another thing I found really helpful is my asthma specialist says that some people get symptoms before their PF drops (like me!) and that I can treat based on my symptoms as well.

Bee

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Hi Snowy,

Im glad you managed to escape & hope you get better soon.

I dont understand why youre being treated with a drug you dont respond well to.

Its a good job youve got a stash at home.

I do kind of get early warnings from my pf readings, so im lucky in that respect.

Up until my last attack which was about 6 weeks ago, my pf was around 550 to 575ish.

My doc told me that as a rough guideline, if my pf ever drops to half my normal reading, treat with blue using spacer.

If still having trouble, use one 2.5mg neb & ring ambulance.

Then its 7 days on 40mg pred & another 7 days at 20mg pred.

Working off that, i need to treat if pf drops to 230ish.

So i cant understand why they told you not to use pred until you drop to 200.

Thats less than half your normal pf.

No wonder youre not sure bout your new treatment plan.

Get well soon

Howie

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thanks for the replies guys...

no wonder am confused yes!

the specialist reckons that as i am on ciclesonide inh double recommended dose that should be enough inh steroid without need for systemic oral pred as well :S so wants me off pred at the regime i said bout ...

and also as i have got the side effects of long term usage with the moon face, and bone thinning starting so gotta take calcium supplements etc.. and also, with using them long term, when i need them in an acute phase, less effective maybe ?? and taking longer to recover each time, i dunno, just a thought!

when i got discharged yesterday, didnt feel ready to be, PF pre 350 post 10 puff, inh was 440 (best is 550) and managig 4hrly. however overnight not so good, back to 3hrly and less and PF down to 280-300. with my old asthma nurse, her plan was to start pred at 40mg wen PF and symptomatic PF at 330, attend A+E at 280, yet havent met with new asthma nurse yet only spoke with her on phone and it was the consultant in the clinic and in his letter faxed through to local hospital who said, do not restart pred at 40mg unless PF 200 :S which worried bout.... when PF 280 last night, was 3am, audible wheeze, nellie put on wieght, couldnt catch breath, and coughing up green (sorry!) got resolving pneumonia :S

so waiting to speask to asthma nurse before seeing her inclinic with consultant on 24/3/11 bout proper wean of pred as well as weaning of salbutamol...

that's another thing, weaning of sally in adults is crazy, they got me to try and go from nebs onto 2 puffs 6hrly too quickly and didnt work... i had to be weaned like a child- much slower as couldnt tolerate it..

xx x

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... by the way,BTS guidelines thought they say you gotta be >75% best before discharge home = above 470 for me before dicharge ?? and i certainly wasnt, so i shouldnt have been sent home!! proved that with my night last night and way i am today :S ...

oh well, as the song goes, 'the only way is up....'

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Ah...I hope you start feeling better soon! As you know...don't be afraid to go back if you need to. It totally sucks, but it's probably safer.

Bee

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thanks Bee. to be honest though, what would they do diff? got nebs, steroid, PF here. although, if struggin i know will need oxygen, iv mag + amino, so if cant cope asthma wise then costa calling...

but for time being, nellie behaving, just cough cough cos of the pneumonia i thinkmore than anything!

asthma nurse at the local hospital yesterday suggested wheatgerm something ? u put it in the micro, for pai relief ? u heard of it ? works like a hot water bottle she said. cos i am in hell with pain on top of everything else.. and asked for suggestions for pain management.

hope ur well Bee

x x x

[Skee-skee]

I can understand why you are a bit confused if they keep changing your plan!

To me starting oral steroids at a PF of 200 sounds a bit low. I think the guidelines say you should start oral steroids with a PF of below 50% and consider steroids with a peak flow of 50 to 70%. I start steroids when my peak flow is below 50% or if I am coming down with a cold (i.e. will be below 50% imminently!).

I think more often than not my peak flow hasn't been near 75% before being discharged from hospital. I think sometimes the doctors realise they will be waiting a long time before your peak flow is stable at 75%.

I guess you are going to discuss your treatment plan at your next appointment. Have you ever asked about trying to come off the steroids more slowly? Some people only reduce by 1 mg at a time, which might work better for you.

Hope you are feeling OK and managing to catch up on a bit of sleep! Take care.

Bryony

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thanks bryony

yea 200 is lil bit!! but then with 550 being my best 225 would be 50% so 200 would be 36% :S so defo need to be on steroids before then or i will be in trouble and thats my worry!!

so will have a lot to discuss with asthma nurse on monday. for time being on 15mg still, for another week, then down to 10mg for week, then 5mg. got plenty pred here to last for another millenium! haha. spoke briefly to asthma nurse bout a plan like that of reducing 1-2mg per week, she said thats a possibiliy...

x x

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Wheatgerm heated things

Hi Snowygirl,

Hope you get all this sorted - not that I'm remotely expert or anything but with the 'start pred below 200' sounds to me a bit like someone is following a standard guideline without considering what your readings actually are and what you personally need. Would 200 be half your best predicted by any chance?

Re the wheatgerm things - you mentioned those in a post on my thread and I meant to say they're kind of wheat packs that you can either put in the freezer or heat in the microwave, like a hot water bottle but less fiddly (instructions come on packet) - it's like a more comfortable heat/ice pack like the ones you might use for a muscle injury, and you can get them in loads of places, even somewhere like Cards Galore (they often come with a cutesy animal cover but you can get ones without too). I have three that various people have given me, haven't used them for pain relief but they do feel good.

Hope that helps a little, at least you can try one. And hope you get all this sorted out or at least a bit more under control - sounds horrible!

xx

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hi philomela

yes i did. wheatgerm yes. i will TRY and make it out to the shop tomorrow to hav a look although feeling rough still so may s my flatmate or friend for me

yes my predicted is 440 and my best i 550, last hit my best in oct, early nov.

nearest of 480 prior discharge, during one of my recent admissions, but nowhere near it on this admission this week, mon till fri - well 440 yesterday lunchtime post neb, prior to being told can go home, but since then, highest am getting is 410, 420 yesterday evening then last night down 280 - 350 and today 350 throughout . . . still to do 15mg pred for week . . .

cant wait to breathe 'normally' for a while, back at work thurs :S i hope

x x x

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I find it amazing how different all our plans are. I know we're all individuals and respond differently, but the variation seems extreme. I assume there are no guidelines about how Pred should actually be used in people like us and so they sort of make it up.

I'm on similar meds and have similar issues to you (including double ciclesonide), my best PF is also 550, and my plan says to increase Pred at 400!!!! This actually seems to work for me - we did this last time and caught things in time, so no long lasting issues and importantly no admission. Of course it's really difficult to get some doctors to listen to a plan like this. I would be really worried with a plan as low as yours as it seems to mend a serious problem rather than stop things getting serious in the first place. Can you talk to your nurse/consultant about it?

[angievere]

Just a word of warning about using wheatgerm packs. I saw a news item the other day where it said people were overheating them in microwaves and they were then catching on fire in people's beds! It showed someone's charred bed!! I've got a wheatgerm pack and find it lovely and comforting, but since watching that I only microwave it for 2 minutes, not like before. Unfortunately I threw the packaging/instructions away ages ago, but had been microwaving it for 4+ minutes ie to make it really hot.

Hope things improve for you snowgirl, you've had such a tough time of it. xx

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36% of your best seems really low to be starting pred especially as an attack is classed as life threatening when peak flow is below 33% (according to the BNF). I'd be worried about it too and I think you're right to question it.

I agree with Ratty about the variation in peoples plans, it does appear to be pretty bonkers as I start my pred when my peak flows are still pretty high. My plan used to be to start pred when my peak flow was at 550l/min (which is 72% of my PB at 760l/min) because I'm able retain my peak flows for a long time during an attack, by the time my peak flows start falling I'll be feeling really poorly and have a high salbutamol requirement. When I saw my consultant he explained that it's not uncommon for people with lung function as good as mine to maintain peak flows until much later into an attack, so he took Peak flows out of my action plan completely and now its all symptoms based. I'm pretty happy about as each time I've had to take my pred course I've know I was going to need it long before I fitted the criteria in my old plan. Now I don't have to wait and can nip it in the bud before things are really bad.

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thanks for your replies guys...

yeah i will be mentioning it to my asthma nurse tomorrow and seeing consultant on 24th march.

yea nimueh 36% of my best 550 is 200 and BTS guidelines say 33% lifethreatening attack ?? dont make sense, so i think they need to alter that pf and higher it a bit to at least to 250!!

i struggling, symptoms wise at 300

in relation to heat packs, i will remember to put in micro for 2 mins angievere, i dont fancy my bed setting alight!!

x x

[angievere]

Yeah Snowygirl - setting our beds alight would really put the tin lid on it!

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wen got reviewed by docs again yesterday as pneumonia and asthma symptoms getting worse, my PF 320 (bout 56% best, and felt awful, so lord knows how bad i would be with PF 200, i am normally barely conscious with PF 160 - 210 when abble to barely take a breath to do it !!

so doc i seen yesterday, said to increase pred for 2 days, home nebs overnight, and if cant manage, back to costa- diff hospital . . **sigh**

x x