To All,

I don't usually reply to these messages but I do read them all. I am Lee
Parker's mom. He is on the Canakinumab study at NIH. He is doing well on the
new drug. However, there has been some issues with eye inflammation. His dose
has been increased a couple of times but I am unsure whether it is high enough
yet simply because his eyes have been getting red quite a bit more often than on
the Anakinra. He does appreciate not having a daily shot. It has made going on
trips for him a lot easier since there is not the problem of packing the
medicine and keeping it cold.

Lee has been seen at NIH since he was nine years old and he is now seventeen.
It has done wonders for him. When he began the study, he was below the growth
charts for kids his age. He caught up with his peers while he was on the
Anakinra and now is a "normal" size. It is very noticeable when you look at his
pre-NIH photos and then look at him now. All I can say is that it has been and
continues to be a wonderful blessing for our family that he has been involved in
these studies at NIH.

Good luck to all!
Marie Parker

--- In nomidsyndrome@yahoogroups.com, "sfokaren2003" <sfokaren2003@...> wrote:
>
> Becky,
>
> Seth is on the Canakinumab, the new drug that is a monoclonal antibody drug
against IL-1, and has been on it since August 2008. He is in the study through
UCSF, here in San Francisco, and gets it every 2 months. It is keeping him at
the same level of coverage as he had on the anakinra, but he only has the shot
every 8 weeks! It is amazing, but he did have to go through a bit of adjustment
to get the right dose to cover his needs, especially headaches and other CNS
issues. He was at the NIH in Feb and his MRI and spinal tap were ass good as on
the anakinra at his best levels ever, so that was good news!
>
> I have met 2 of the others on the drug that are doing the study at the NIH,
and I know that they too have had to get dosed up to a correct dose for their
needs, and I had met them early in the study, so I do not know how they are
doing right now, but I hope as well as Seth!
>
> We would have done the NIH study, as I think it is very good and they are
really watching the patients closely, but could not pass up the study being
right here in my town, as I could not seem to work out how to deal with trips to
DC every 8 weeks, or sooner if there were complications.
>
> I would have done it if Seth was younger, as he did this for the anakinra
study, but it was so hard to have him out for one week of school in Feburary
that I am glad to not be traveling that much now. We now will go to the NIH
yearly, and are so glad that he can still go to the NIH for care, and do the
canakinumab here is San Francisco.
>
> There is great hope for this drug to be FDA approved in about a year or so,
which would be so great for everyone! The NIH study will really show how well
it helps people with CNS involvement. Seth used to have elevated brain pressure,
some issues with his MRI and of course, bad headaches, and positional nausea and
vomiting ,and terrible spinal pain with flares before he was in the anakinra
protocol.
>
> He did have a return of some of those terrible symptoms while on the lowest
dose of the Canakinumab drug, but once they raised him to the higher dose, he
has been doing very well, and even at his visit to the NIh at 7 weeks out on the
drug, his labs, LP and MRI were as good as he was on daily doses of anakinra,
so it does work well, if you get the right dose.
>
> Feel free to call me if you want to talk. I will be home this evening after 8
pm Pacific time or tomorrow morning 415-831-8782. We will be out of town for
easter weekend, but otherwise I am around for the next few days, and not at work
tomorrow.
>
> Karen Durrant
> --- In nomidsyndrome@yahoogroups.com, Becky Bakko <beckybakko@> wrote:
> >
> > Hello to all,
> >     We are home fanaly after staying an extra 5 days because Tiffanie got an
headache after her spinal tap. She is doing so well he bone  are at an age of a
15 year old and she i only 13 years old. she is 5feet and 5 inches tall now. she
want hae to go back until next year now.
> >   I' m thanking about doing the other study that Dr. G has going on. She
said that there are three people on it so far. I dont remeber the name of the
medican but you get and shot every two monthe insted of everyday. Dr. G and i
want to see if it would work for me becuse i still deal with the headaches. I
found out this trip why i have them,it is because i have scare tusing at the
bottum of my head and all over my brain too. It is where the brain is spouse to
azorb the spinal fluid. mine dont azorbe the fluid verry well because of the
scare tuse and also i still inflation on my brain from where the scar tuse is.,
So theay wan to see it it will help me.
> >  Dr. G said, that the others that started this studyhad no existing
probluns.
> >  If any one is on this study plase let me know how it is.
> >  I have to realy thank about it because there s a lot of flying i have to
do. and with me living in Washington state it is a long ways almost 5000 miles
round trip. I would like your guys point a view. Tiffanie will not be doing this
study fright now maybe later on.
> >  thanks so much
> >  Becky Bissett
> >
>