Thursday, September 9, 2010

The News I Received at my TRANSFORMS checkup 22

I didn't mean to leave you hanging -- I really did intend to finish this up, but life got in the way.

Anyway, while I was being examined by the head neurologist overseeing the study in my area, he mentioned that everyone is excited that Gilenia is on track for FDA approval to be announced on the 21st of September.

EEEEEK!! That's too soon. (Sorry to those of you so patiently waiting, I just had to have a selfish moment).

Actually this is amazing news and I am so very excited! So was the neuro. He said "After all this is over, and history is made with this new pill form of treatment, you can say you had a part in making history. What you have done will benefit MSers for years to come. You should be proud."

He also told me that Novartis has me scheduled to stay in the study for another year (translates "1 more year or drugs.") and then they will cut me loose with a 3 month supply as a parting gift.

This is totally different from what other people have claimed their trial people have told them. I thought I distinctly remembered crying tears of joy when someone said they knew for a fact we'd be getting  5 years for free.

Anyway, the drug will be a second line drug and will only be prescribed if you have failed 2 other forms of MS drug treatment. Ironically, even though I have been ON this drug for over 3 years now, I would have to prove that I can't take the others before I can be prescribed this.

So I go home floating on a cloud as the reality of how all these years of poking and prodding are resulting in a pill form of MS treatment finally coming to pass. It just makes me burst with pride at all us guinea pigs hanging in there, and I have so much hope in my heart for those of you who cling to every whisper of a hint that something new and better is just right around the corner.... It REALLY IS!

I have said it before and I'll say it again. I was in a terrible spot before this study, and while I knew I was blessed not to be as disabled as other less fortunate MSers, that thought didn't lessen my miserable attitude and feelings of hopelessness. Looking back, I think now that I may have been nearly suicidal. I was just at the end of what I thought I could deal with and knowing it couldn't get any better didn't help. (Rationally, I know now that's not true, but in my own mind, warped by depression, that was how I felt).

This study gave me my life back. I feel better and better all the time, and have not had an MS attack in over 3 years now. Back then, you couldn't have convinced me I'd be sitting here blogging these words 3 years later.

So if you are at your wit's end and praying that something will help you because you just can't take another day of your situation, please hang in there and know that something better truly is within your reach now... just a few more days...

The New Look:
After trading in my empty pill bottles for 3 new sealed bottles, I woke up the next morning after my appointment and groggily grabbed one of them to take my daily pill. I puncture the foil seal on the bottle to set the capsules free and rolled one into my hand. I stare and blink. Not comprehending.

I peer into the bottle to see it was full of about 35 more capsules that looked just like it.

I slap the first pill back inside and cap the bottle, setting it quickly on the table as if it were poison, shoving it away.

I whipped out my cell phone and call the trial nurse, who, much to her chagrin, is on my speed dial.

Trial coordinator: Hello?
Me: I just open my medicine and they've made a mistake!! I got the wrong pills!
Trial coordinator: What? I don't understand. What are you talking about?
Me: The PILLS! They aren't pink or brown, or whatever you want to call that color!
Trial coordinator: They're not??! What do they look like?
Me: (getting out bifocals and trying to really see them) Well, they are gold on one end, white on the other end, and have little gold racing stripes that go around the white end.
Trial coordinator: (silence)
Me: are you there?
Trial coordinator: oh, yes, I am here, but I am confused. Let me call Novartis and I will call you back. Wait 10 minutes and do not take the medicine.
Me: Ok (squinting) but now that I look closer I do see it says "FTY 0.5mg" on the one end of the pill.... maybe this is the new look??
Trial coordinator: That is what I suspect, but let me call to confirm first.

So I wait 10 minutes and my cell phone rings.

Trial coordinator: (excited!) Yes! That is the new look! Tell me again what they look like because now I am curious since I haven't seen them.
 Me: (describes them again)
Trial coordinator: I called all the other patients and asked them to open all their bottles and look. You are the only one who got the new pills!

I wonder if it's because Novartis has been watching my blog? (I'm full of myself, aren't I?) but seriously. They have been reading my blog a lot. It's in my stats.

So, if Novartis is following along, isn't all this great publicity you're getting from my blog just wonderful? Say, worth a lifetime of pills? (sigh I had to try).

Anyhow... here they are... TA DA! Sorry the picture isn't so great but we had to use my sister's cell phone since my video camera's "camera only" mode sucks.

Now I'm sorry I didn't hold back on of the pink ones. They're gone forever all but for the picture in the background of this blog.

I guess they needed to make them gold and add racing stripes to justify the price they're going to be gouging us for.


  1. Jeri,

    Thank you for not keeping me waiting too long for Part II (even though you probably weren't thinking,"I am SO gonna keep Anne waiting just to f*** her head up."

    Very exciting news indeed! Although I really, really would like Novartis to send us lab rats home with more than three months worth of meds (I got a neck pillow and a water bottle). I mean really, some people don't have insurance and will never, ever be able to buy these. And when I say "some people" I mean me.

    Too bad I married for love and not the size of his bank account or quality of his health insurance policy. But I digress...

    Well honey, this journey certainly isn't over but wow, the day is almost here when we'll meet someone with MS and we'll ask them, "So, do you take any meds for it?" and they'll answer, "Yea, the pill - Gilenia - and I love it!" and we'll just give them a wise and knowing smile.

    Thank God I'm only on month 18. Talk about getting in just under the wire, huh?

  2. I loved this post SO much. You have put into words exactly how I feel about these trials, Jeri! Exciting times ahead now. Love the new look of them, too, hehe.


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