Saturday, September 25, 2010

It's human nature I guess

Ever wonder why the nightly news is always negative? Why we will zip right by an amazing sunset, but give us a good car wreck and we are slowing down to take in ever gory details? I guess it's only human nature to be fascinated with the ugly side of life.

I went to a message board for people with MS. Anyone who's had MS for any length of time has been there, I'm sure, as it's probably the biggest one for our condition on the web. I used to hang out there quite a bit back before the trial started, and even well into my first year of the study.

Then one day I realized there is life outside of MS and I was feeling so much better on the Fingolimod (ok, ok Gilenya) that I wasn't dwelling on my condition as much as getting back to the business of living. Once I broke away from that message board my head became more clear and my depression started to lift. I attributed it to the medication and the relief of finally having the relapses subside.

Well, yesterday I went back to visit and see if anyone was talking about the pill. I mean, I'm so giddy with excitement that I just had to see what folks were saying. I found a thread where the mention was made of the drug getting approval, and while most folks seemed hopeful, several others were quick to point out the serious side effects.

I was overcome with an urge to let everyone know just how much good it has done for me, so I posted.

Imagine my surprise and hurt when someone responded that they were tired of hearing good news and wished someone who'd had side effects would post.

Really?? Good news about the long anticipated PILL FOR MS was something they didn't want to hear?? I know I'm Novartis' #1 fan and I feel I owe them my very health as I know it today, but they ain't payin' me, people. This is real and it's my genuine experience. I haven't been blogging for the past 3 years just to string you along and lure you in so Novartis can finish you off with their pill. True, your mileage may vary, but come on! I"m not the only one out of the 1250 or so trial participants (in what has been touted as the largest clinical trial for MS EVER) to have a positive outcome.

What? My experience ALONE got the FDA to say "ya know, that patient #008 at that Florida location seems to have done really well. Ah, what the hey, let's give it a rubber stamp and call it a day."

I'm not buying it.

Especially after the Tysabri fiasco, don't you think they are crossing t's and dotting i's these days when it comes to immunomodulating drugs??

So I left a comment saying I was sorry to have been the bearer of good news and that I didn't realize they weren't looking for that.

I won't be going back. I know that a lot of great folks are there and that there is a lot of suffering going on and people looking for camaraderie, but there is also a lot of negativity. I don't need that in my life.

There are too many beautiful sunrises I want to pull over to watch. I'm not stopping to see the train wreck, and if you wanted me to tell you about it I guess you'll just have to wait for the evening news instead.

Wednesday, September 22, 2010

Today is the day!! The FDA Approves Gilenya (Fingolimod, FTY720)

I had been watching closely all day yesterday for the mention of approval, but went to bed broken hearted.

Today was a mad house of domestic flurries and I forgot all about checking the FDA site. I even forgot to check my email all day until just now.

How fitting it was, then, that the first email I should happen upon was that of my clinical trial coordinator. She sent no message but rather a link to an article announcing the FDA approval.

I'm elated, excited, overjoyed and nearly in tears about this news. Whether tears of joy for all who have been awaiting the pill, or tears of sorrow as a chapter in my life will soon be ending and I will once again have to figure out how to pay for my meds, I'm not sure.

I feel like jumping up and down and I don't know why there's no fireworks when I look outside... surely it will be on the evening news, right?? I mean this IS BIG! The first EVER pill for MS. Wow! And I've been on it for 3 years already!

Anyhow, here is the news straight from Novartis' mouth:

And another link on Bloomberg Business Week:

I guess I have to get used to saying "Gilenya" now. Took me forever to learn to spell Fingolimod. Thanks Novartis.

Really, though... THANKS NOVARTIS!! -- and CONGRATULATIONS! You gave me my life back one pill at a time. I wish you much success with lots more MSers out there.