Anakinra: Morning all hope your ok....good weekend... - NRAS

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Anakinra

SianLouise profile image
10 Replies

Morning all hope your ok....good weekend plans anyone? I'm definately feeling a bit stiff today- was out clubbing last night so only had 5 hours sleep. I was wondering if anybody else was on 'Anakinra'? And what have you found it like?

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SianLouise profile image
SianLouise
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10 Replies

No not on anakinra never heard off it to be honest.

But wow out clubbing it must be working well, I think my clubbing days are well and truely gone bo hoo!

Hi - Looks like this is a fairly new biologic? Not sure myself but Iam sure either Summer or LynW will be able to tell you more. You are young so may be they consider the treatment differently to some old bagpuss like me :-) i have not heard of anyone on hearing using that one.

But like Julie says if you can go clubbing - must be working well. Do you get any side effects?

Take care

Julie xx

its not new !but not n.i.c.e approved so funding even more tricky for this one.. wouldnt mind giving it a go if have chance. more commonly used in americal its been around at least 4 years

Hi there, Alison's right it's not a new drug infact it's a very early one as I was considered for it quite a few years ago.Then along came the more commonly used ones,Humira,Enbrel etc, perhaps it just doesn't work as well as these and therfore not used as much.Not really sure why.

Like julie said though it's certainly good for you, good on you going clubbing keep it up girl!! I'm soooo jealous!

Take care

Mandy xx

I love your post!

My weekend plans? hmmm no clubbing lol, more of a snuggle up and watch 'in the night garden'..... but I feel the best I've felt since being diagnosed and I'm going to go shopping tommorow!!! :)

Didn't you go on holiday not so long ago? how was it and where was it?

Hi :)

Anakinra is a drug that was used years ago, possibly before the anti-tnf biologic drugs appeared on the scene, can't quite remember! It works by blocking interleukin-1 (IL-1), a protein present in excess in RA.

The current NICE guidelines do not recommend the use of Anakinra in the treatment of RA other than in clinical trial situations.

nice.org.uk/usingguidance/d... (last update 15 June 2011)

From what I can gather the cost of the treatment (which seems alarmingly expensive!) outweighs the clinical benefits so it is no longer being recommended.

Seems strange though that you should be on this drug; I did wonder when you said you do daily injections! Are you on a trial? I'm puzzled now!

Lyn x

SianLouise profile image
SianLouise

Have fun shopping Wiliby :)! Haven't been on holiday yet as the bf is stuck in the Falklands ( RAF)- I'm dying to get on that beach!

Interesting comments guys- Thank you:)!...I thought it was the hot new drug! I was on humira when my RA flared up again so after being in hospital for 2 weeks they applied to the national medical board for a trial- it was very complicated to get funding. I think I'm on the injections until further notice! Not enjoying the daily needles it has to be said! However I've felt mostly well since I've been on them so obviously doing its job!

Xx

in reply to SianLouise

Really glad you got the funding as when you are in bad place you dont care about cost v benefits particularly if you are one of the few who individually benefits !!!

As Alison says it works well for some people therefore for you so far it is hot !

Go well

fiona xx

love your pic great xx it works well for some people like every thing xx

Gina_K profile image
Gina_K

Hi, I have never heard of that, but hey its working for you so sounds good. Dancing sounds great fun - well done you & your docs for getting the approval - young gal with life ahead deserves all the opportunies, she deserves!!!

Gina.