Sunday, December 5, 2010

Nearing the end

I went for my checkup on December 1st. Just the usual blood draw, EDSS test, BP, HR, and one other thing I've never done before...

I filled out an application to a special drug program offered by Novartis for clinical trial participants. I had to provide my shipping address and my insurance information. Since I have no insurance that part was filled in with "None".

The rest of the form asked for my doctor to provide prescribing info and I was told the lead investigator would be the one to fill that out.

This form was supposedly faxed off to Novartis the same day and I should be receiving a call on my cell phone within a week or so gathering more info or instructing me on what happens next.

When the details have been all ironed out and I am guaranteed to be on a Rx and know how I'm going to get my Gilenya, then I'll be scheduled to have my Exit Exam.

The exit exam will include a skin exam, eye exam, PFT, MRI, EDSS, EKG, CT, BP, HR and probably a lot more ABCs I can't think of off the top of my head. Basically every test I had to take to get into the trial, I will be taking to get out of it too.

My clinical trial nurse said to expect this final exam (I have no idea how to cram for that) after the first of the year. I have more anxiety about leaving the trial that I had about getting INTO it. I know that sounds crazy, but things have gone so well for me and I have not relapsed in so long that the idea of leaving my comfy cage and exercise wheel behind to just be on my own with a new neuro is scary to me.

I'll be sure to document what happens with the application process as well as the Exit Exam for those of you in the trial who are curious about what happens next.

I'll keep blogging if you keep reading this drivel.


  1. My trial nurse was SO stressed she couldn't answer my questions on Friday - I know I'm not going to pay anything (though I went ahead and got on Gary's insurance as well as mine), and I know my trial neurologist is prescribing it. I am under the impression I'm keeping my non-trial neurologist. But who knows? My tiral nurse was more concerned about whether we were getting chest CTs or CAT scans. I'm sure it will all get worked out.

  2. I don't know what's going to happen in my case, since Gilenya is not approved in Europe yet. I'm in a country (Ireland) with a state health service, but when it comes to a treatment as exotic and expensive as this, that's no guarantee of anything. Never mind that the Irish Health Service is going to get hammered by budget cuts imposed by the IMF. So it'll be up to Novartis to decide whether I deserve a discount or freebies, after putting my body on the line for 3-1/2 years so far!

  3. thanks for update on your situation. I'm also waiting for Novartis to come back as my nurse said they would call. Have been through all the tests you mentioned - now just have to wait. Still thanks very much for sharing your thoughts and status.

  4. Today I heard the most beautiful words: "stop taking your Avonex injections in preparation for beginning Gilenya." I am giddy with happiness and excitement as well as nervous and a little bit scared. I face this new step in my journey with hope in my heart and the knowledge that there is at least one person out there who recieved this treatment and is better off because of it. In my joy, I send you prayers that you will find the answers to how you can continue using the treatment that offered you peace and comfort of mind and body. Thanks and blessings to you!


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