Louise, Thanks and I think of Tom as a hero too, and his story has been an
insipration to
Seth. I am glad that Tom continues to do well, and had a great trip to see
family in the UK,
what a trip! It is amazing what a difference these medications can be.


Seth will be getting his next injection of Canakinumab on Jan 7th, he is on the
4 mg/kg
dose now, and is very stable, so I will be excited to see how his labs are ,and
things this
time. It is still hard to imagine that he dose not have to need a daily shot
anymore, and
now that he is on the higher dose, he is doing incredible again for the full 8
weeks time
span, with no breakthroughs of symptoms anymore.

I hope that eventually it will get approved and be available worldwide. Seth
loves it.

We go back to the NIH the last week of Feb, a week before he will need another
dose of
the drug, and they will be doing the very involved MRI, eye test, Spinall tap,
etc so I will
really get to see how well this new drug works, even right before he is due for
another
dose, as compared to the levels he had while on Anakinra.

Happy New Year,

Karen
--- In nomidsyndrome@yahoogroups.com, "Louise Keatley" <speech58@...> wrote:
>
> that's so great that seth is doing so well
>
> I hope eventually this treatment will be suitable for tom
>
> seth has been such a hero, first with the anakinra and now trialling
> the new drug. thanks for keeping us updated
>
> Love
>
> Louise
>
>
> ----- Original Message -----
> From: sfokaren2003
> To: nomidsyndrome@yahoogroups.com
> Sent: Saturday, December 27, 2008 6:17 PM
> Subject: [nomidsyndrome] Re: Happy Christmas to One and All!
>
>
> Louise,
> Merry Christmas and fingers crossed for you and all that there are no issues
with
getting
> the anakinra in 2009!
>
> We have tried to get their attention about things, so I hope things go
better than we
> expected, and maybe the company will even be better in the future with
concern for
> patients with NOMID< MWS and FCAS.
>
> I will be thinking of you all. Seth is doing very well now on the
Canakinumab, and is
> staying very stable and symptom free (s far) on the double dose every 8
weeks, which
is
> a relief! He is due for hisnext dose Jan 7th, and is feeling wonderful on it
every day,
> just as he did with the anakinra, so I hope that whenever it is available
for others, that
> they too do as well on it.
>
> I hope that you have a wonderful New Year too!
>
> Karen
> --- In nomidsyndrome@yahoogroups.com, "Louise Keatley" <speech58@> wrote:
> >
> > so glad Jack could be home for christmas
> >
> > Merry christmas and a happy new year to all our nomid family
> >
> > Love from Louise ( tom in australia's mum) and family
> >
> > ps our dr spoke to amgem and they have said biovitrum should continue to
supply
us
> > with subsidised anakinra. Our current supply runs out late jan, so I guess
we''ll
> > find out soon.
> >
> > louise
> > ----- Original Message -----
> > From: aislingmcn
> > To: nomidsyndrome@yahoogroups.com
> > Sent: Saturday, December 27, 2008 10:26 AM
> > Subject: [nomidsyndrome] Happy Christmas to One and All!
> >
> >
> > Hi all,
> > Sorry have been out of touch but have been busy trying to keep Jack out
> > of hospital.He managed to stay home for Santa this year.He has been v
> > unlucky in previous years -spending the last 3 in Hospital! He is quite
> > sick again and looking like he may need to be admitted to hospital but
> > we'll keep our fingers crossed!
> > Molly & Jack were spoiled by Santa and we had all my family over for
> > dinner yesterday-it was lovely.They stayed till 2am! All a bit wrecked
> > today!
> > Anyway this is just a quick visit-hope you are all well and enjoying
> > Christmas!!I'll pop back in the New Year for a longer chat!
> > I will try to upload some photos of my two scallywags!!
> > Merry Xmas and hope you all have a wonderful New Year in 2009!
> > Love Aisling Xx
> >
>