Wednesday, December 21, 2011

Starting Gilenya

Chilling at the doctor's office right now for my Gilenya observation. So far no problems. Then again the only problem has been getting the medicine. Still not totally sure what coverage the new insurance company is provide and can't find out til the 1st. I'm supposed to get 3 months free from the patient assistance program but that could change to just this year or a month. A lot is still up in the air but since I'm starting this year I should be able to have continued theory. 

I suppose I should clarify that my appeal to the insurance company was denied. They refuse to cover any of the cost of Gilenya. My drug rep basically doesn't know what she is doing and had me waiting for answers that we already had. I still haven't received the paperwork she was supposed to send like two weeks ago. So the delay sucked (sucks) but I'm working on getting a new rep now. I'm taking Gilenya now because My Judy got me the hookup. 

I'm also going through another flare up right now but it seems like the lesions are currently affecting my brain. I did 3 days of IV steroids and now I'm on a week of oral steroids. This makes my 5th flare up. I know that relapse is a more correct term but I hate using it because it makes me feel like I messed up like I fell off the wagon or something. When talking to the doctor last week, we confirmed that my first flare up at Thanksgiving 2009. This is on top of the 3 potential other flares. I'm really hoping that the Gilenya helps lower this. If Gileyna doesn't turn out to be the magic pill for me then in 6 months to a year we will consider a different drug. The goal is get down to zero flare ups.

Not sure what caused my jaw pain but it's pretty much gone now because of the steroids. I haven't had any more migraines since I started them either. I still get a little vertigo but it isn't as bad or frequent so I'll take it.

Woohoo only a few hours left to go of this observation. Once I'm done here I only have one more appointment and then I don't have any for awhile. I could use a break from doctors. I had like 8 appointments last week and 6 this week. So many doctors. I have to schedule some appointments yet for the new year but they should only be about twice a week so that isn't too bad.

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