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jenni_b
#1 Posted : Wednesday, July 17, 2013 2:29:27 PM Quote
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Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
i cant have the tocilitinib.

the hospital says I can have it
my consultant says I can have it
the pharmacutical company that make it will give it in kind

but

the European Medical council, they say NO

apparently their result criteria for cost to risk/ benefit ratio are not met.

I suppose its there to protect patients from taking things that will harm them but with no other options I cant help but feel a bit deflated.

The only other access to a "nib" type drug is via trial. theres another "nib" but its a 50/50 trial. 50% will get the "nib" and 50% humira.
I cannot take humira

its the only one they have conclusive proof caused brain stem cell damage in me.

so thats a no, for now

the consultant feels confident that it will be approved, but its not going to be in the short term.
Im due this knee replacement in September.

so I may get some more answers after then.

In the meantime, on with the steroids (the drugs we hate to love but need to live!)

Love

Jenni

PS If you think thin thoughts whilest eating oreo icecream does that negate the calories?!
how to be a velvet bulldoser
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suzanne_p
#2 Posted : Wednesday, July 17, 2013 4:40:39 PM Quote
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Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
Oh Jenni,

sorry to hear your hope's have been dashed!

i know you've run the whole range of drugs, but hope the steroids keep you going.

you must be feeling deflated,

i think we can be allowed an ice cream or two without thinking calories .. lol, just been out and melted in the garden centre!

Suzanne x
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SueB
#3 Posted : Wednesday, July 17, 2013 7:06:35 PM Quote
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Joined: 8/1/2010
Posts: 255
Location: hampshire
Oh Jenni
How could they! Surely when it is the only option available to you and so many people have agreed the European Medical what sits should make an exception. It makes me mad.
Hugs
Sue Mad
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Rebecca D
#4 Posted : Wednesday, July 17, 2013 7:53:44 PM Quote
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Posts: 242
I feel devastated for you Jenni......

Take a look at this link as it looks like their are major concerns about serious infections with tofacitinib (Xeljanz).

European medecines agency

Love
Rebecca
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Blue Star
#5 Posted : Thursday, July 18, 2013 9:39:18 AM Quote
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So sorry to hear this Jenni

Hope they will change their minds ,

Best wishes

Sophie x
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smith-j
#6 Posted : Thursday, July 18, 2013 7:49:40 PM Quote
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Posts: 714
Jenni

So sorry to hear your news as you were pinning your hopes on this one.

Hopefully something else will come galloping over the horizon soon to your rescue but in the meantime keep going as you always do.

Take care

Jackie
xx
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Paula-C
#7 Posted : Friday, July 26, 2013 3:39:48 PM Quote
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Posts: 838
Location: Nottinghamshire
Jenni........I'm so, so sorry to read this, was really hoping that you would get this drug.

Can you have any say in the matter? After all it is you that will take the drug and not them. If it is a European decision can you not ask your Euro MP to look into it? Forgive me if I am talking a load of nonsense here.

Anyway, the Jenni that we all know and love will.....take it on the chin, get up, dust herself off and start all over again......The Wonky Warrior will never stop fighting.

Love Paula xx
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jeanb
#8 Posted : Friday, July 26, 2013 3:45:11 PM Quote
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Location: Timperley
Devastated for you....but you know how mad I am about this. Love u xxxxxxx
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Rose-B
#9 Posted : Friday, July 26, 2013 11:51:10 PM Quote
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Location: Somerset


Hello Jenni

So sorry to hear this not good news for you. Chin up


Rose x
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jeanb
#10 Posted : Saturday, July 27, 2013 7:06:15 AM Quote
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Location: Timperley
That's a very interesting article, Rebecca. Thanks for the heads up. xx
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bpeal1
#11 Posted : Saturday, July 27, 2013 7:31:39 AM Quote
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Joined: 12/13/2010
Posts: 118
Location: Shrivenham, Oxfordshire
Hi Jenni

In really sorry to hear you can't have this drug. You are a great inspiration to me and I really hope you find something soon.

I assume you have seen this trial and have discounted it as unsuitable but just in case here is a link http://www.nras.org.uk/n...nical_trial_advert.aspx

Becky
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jenni_b
#12 Posted : Sunday, July 28, 2013 11:20:44 AM Quote
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Posts: 2,237
Location: nr Southampton
Thanks all

There's a trial running here at Southampton to do with another 'nib' jak inhibitor

The alternative to the nib
Is humira
Which is an absolute NO for me

But the nib comes in a tablet
And humira comes in injection
So I'm wondering if I could accept the trial

And if I got an injection I can refuse

I've asked anyway
how to be a velvet bulldoser
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