gonna start s/c bricanyl

been having a really rough time recently. been to cons yesterday and gonna start s/c bricanyl. didnt really take much in when i was there. could anyone just give me some info/ advice. thanks!!!

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I will bump up the threads that refer to it there are a couple!

Bex

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thanks for bumping them posts up bex. just a quick question. may be silly but... will i have to be attached to this all the time? i really hoped i didnt have to go down this route. feeling soooo fed up at the mo. struggling on my own with a 1year old too... humm....is there sometime overnight??? im confused?!?!? soryy if i sound stupid! thanks!

[KateMoss]

Hi Oxanna,

yes, it will be 24/7 if you are started on it. Basically, it keeps a constant level of bricanyl in your system at all times whereas with say nebs the level can tail off after 3-4 hrs etc etc. You can detatch it for a bit to shower, bath or swim etc.

The infusion pump is small, about the size of a video cassette with the case on - narrower without, It has a syringe in it full of bricanyl, attached to tubing which is incorporated into a needle or other infusion set ( some are like venflons and softer) . This is most often inserted in the fatty layer around your tummy.

You can carry it around in a bum bag - and make sure the tubing it tucked away from your toddler! I nearly strangled a hamster with mine years ago and my sisters pet bunny bit through it once too! Bunny on Bricanyl!

anyway, have a read of the bumped up post and please ask more Q's

Also, please remember, It doesn't work for everyone so please don't be disapointed if it doesn't work for you.

kate

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Kate, your point about it not working for everyone is a good one. For me it has made a massive difference but I know several others who got no benefit or who had problems with the side effects, shakes and faster heart. Some places just sort of hand you a pump and let you get on with it. At the Brompton they put you through a blind trial and use both how you feel and clinical data to decide if you are going to benefit from it, they also make sure that you can cope with the side effects and the dose is correct. I don't know what the procedure is where you are being treated has anyone said?

Bex

[KateMoss]

I was given it straight, had 3 days extra in hospital to get used to it then home!

No trials , placebos etc. But I think they are more strict about starting it now in most places - I have a very good consultant who would not give it out willy nilly anyway.

Kate

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Hey Kate, sorry I hope I have not caused offence I did not mean that you were given it willy nilly I do know of people who were given the pump at an out patients shown how to use it and sent home! I think pretty much everywhere is more careful these days though.

Bex

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hiya oxanna what can I say since I got my infusion ts changed my life alot. And please dont be scared to ask any questions on this site if your having any problems when you do get your infusion all these guys are still helping me things I didnt know and ive had mine a year best wishes and good luck xx

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thanks for the replies everyone. i was wondering how long it takes for a trial at rbh as thats where my cons is. also... slightly concerned that if it dosent work that nothing ever will! prob because i always thought this was the last resort. please tell me there are other things they can try if its not for me!

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Trials at the RBH take 2 weeks.

Bex

[KateMoss]

LOL, Bex, no offence taken - I sometimes don't phrase my sentences correctly.

And you are much more articulate plus you will have all the info about trials & set up much more fresh in your mine.

Kate