Wednesday, April 17

MS Walk 2013 and...ok, This post Rhelly Not bout the MS Walk

we had a great time.  my t-shirts were a hit and there were actually more people to support me than last year, some of whom already told me to put them down for next year.  Now!  if only my photo tek outta will send me the pictures ;-), i'll post some.

ok.  so, i went to Dr. Gilbert yesterday.  first thing he said to me when he entered the room was, " ready to make some changes?"  "oh yeah, you know it" i responded.  we talked about the length of time that i've been on Tysabri, he asked me if i thought it has been working to which i responded, "i suppose so because my MRIs look good and i really can't think of a time recently when i had any kind of relapse.  i just wish it had helped my walking" but i guess you can't get EVERYTHING!  so since i'd learned of the rebound effect yesterday, i asked him about that and i must say i was really surprised at his response.  I expected to have a small battle about it with his blowing it off because it's not a proven phenomenon but instead he responded that he'll put me on 2 sessions of steroids 3 weeks apart to try and stave off anything because he wants the Tysabri to completely flush out of my system.  so....bottom line?

  • i go back on 5/10 and 5/31 for steroids (i've done the intravenous steroids before and had good results (the pain that i was given it for went away)) so i'm hopeful (because ain't much else i can do) that these next 2 sessions will be ok and then my Tecfidera will arrive in the mail in early June

so then the nurse comes in to sign me up.  she was very excited to hear that i'd already ordered the CBC ...if fact her exact words were, "thank you for being proactive!".  in my mind, lady, u eh know the 1/2 of it; the less number of times that i have to be stuck for blood the better.  Oh and by the way, i guess since las week friday was my last infusion, my body decided to go out with a big bang because boy did i make those poor nurses work!!!  anyhoo, she went thru a few things with me...

  • how to mitigate and minimize the side effect
  • sign here, sign there
and get this...Biogen, the manufacturer, so wants people to use this drug that:
  1. they have the copay program so that I only pay $10 and they will foot the rest with my insurance 
  2. if for whatever reason my insurance company says they're not paying for it, Biogen will give me the drug FOR FREE ...WHAT!?!?!?
i hope that most people will be able to take advantage and the fine print doesn't exclude too many people (because i'm sure there is some kinda clause somewhere).  so it's official bye bye Tysabri, oh and they did a 3rd JC Virus test just to be absolutely sure and i was positive again, so i gone Tysabri, it was good while it lasted but all good things must come to an end.

Alright...ah gone so, ah rinse out allyuh eyes enuf!

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