-----Original Message-----
From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of Kate Barton
Sent: Tuesday, April 07, 2009 8:41 PM
To: nomidsyndrome@yahoogroups.com
Subject: RE: [nomidsyndrome] Re: We are back

Glad that you are back home Becky, good job that the NIH pays for the flights, I had to stay longer the very first time I took Alex and the flight was not paid by the NIH (testing prior to going on the study) even though I told the airline that Alex had been in the intensive care unit I still had to pay $300.00 more because of the cancelled flight.

Go to know that the new drug is working for some of you, I asked if Alex was a good candidate but his disease isn’t mild enough to go on it, I think Alex has just excepted that 4 injections a day are normal. These kids just amaze me with their get up and do it attitude. I guess it’s the only thing they really know.

Regards Kate

From: nomidsyndrome@yahoogroups.com [mailto:nomidsyndrome@yahoogroups.com] On Behalf Of sfokaren2003
Sent: Tuesday, April 07, 2009 5:47 PM
To: nomidsyndrome@yahoogroups.com
Subject: [nomidsyndrome] Re: We are back

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
>