Tuesday, April 13, 2010

Some days you can't escape the things that bother you

As illustrated by this dog, tormented by his own shadow (there's a couple F-bombs in the audio, so watch out for young ears).



It's like trying to escape or confront the *shadow* of MS... only way more funny.

Gilenia(R)* (FTY720) shown to reduce relapse rates regardless of treatment history

Read the whole press release

An excerpt of the part about the TRANSFORMS trial:

Of the 1153 patients who participated in the one-year TRANSFORMS study, 1027 (89%) elected to enter the one-year extension study. Patients in the extension study who also received Gilenia in the core study remained on their original dose (0.5 mg or 1.25 mg), while patients who had received intramuscular interferon beta-1a (Avonex®) were randomized to receive Gilenia 0.5 mg or 1.25 mg[2].

Patients who received Gilenia 0.5 mg for two years experienced a consistently low ARR at year one (0.16) and at year two (0.18). These patients also retained a significant reduction in relapses and MRI brain lesions over two years compared to the group originally randomized to intramuscular interferon beta-1a and later switched to Gilenia[2].

In the subset of patients who received intramuscular interferon beta-1a during year one and Gilenia 0.5 mg during year two, the annual relapse rate in year two was reduced by 31% and the number of new or newly enlarged T2 lesions in the brain, a marker of disease activity, was reduced by 67% in the second year[2].

These findings on efficacy are consistent with those of the one-year core TRANSFORMS study demonstrating Gilenia significantly reduced annualized relapse rates by 52% (0.5 mg dose) vs. intramuscular interferon beta-1a[3].


This is such awesome news! I was just explaining to my son this morning how close I was to suicide before this opportunity came along. I wanted him to know that no matter how bad things may seem in life, the situations we find ourselves in are fleeting, but death is permanent. If I had chosen suicide, I would have deprived myself -- an my family -- of these wonderful last three years that I had no idea would be such a vast improvement for me health wise.

You just never know where your rainbow is going to come from...Gilenia (Fingolimod) is mine. :-)

Thursday, April 8, 2010

A gentle nudge, hint, suggestion for Novartis

What the heck. I've already posted twice this morning, why not make it a hat trick, right? That should settle the natives who have restlessly been awaiting some new smoke signals from my blog.

Anyhoo, I was hanging out on Facebook yesterday trying to wrap my 49 year old brain around the site that was obviously created for the under 30 crowd (and being unsuccessful at figuring anything out, I might add) when I got a message from a friend. She's also an MSer and in the Fingolimod, FTY720, a.k.a. Gilenia trial and she knows how concerned I am about my medicinal future and whether or not I will be begging for someone to help me pay for the stuff month by month after the party (clinical trials are FUN!) is over.

I asked if I could quote her and she said I could. Here's what she had to say:

"I just had my 18 month check up yesterday, and was told by one of the trial coordinators that the head of the study from our location was/is working on our behalf.

At a conference recently, the neuro was advocating to Novartis that they should do something to take care of us guinea pigs when the drug is approved to the FDA and released to the market. He didn't think it is right if we have put in the time, just to possibly be cut off of our wonder drug."

So, to Novartis, if you are listening, PLEASE PLEASE (picture me on my knees here) have mercy on those of us who have laid our bodies on your examining tables and offered ourselves up for your poking and prodding, needle sticking and eye exams and PFTs and MRIs and CTs and all the other abc tests...

We have come to you as a last resort, some of us. We have no health insurance and the only way we could get treatment for our disease and ease some of the suffering and slow the progression was to gamble with our very lives and let you use us as guinea pigs in order to advance treatment for all who suffer from MS. We have had to deal with the news that at least 2 fellow lab rats gave their very lives to this clinical trial. For a hypochondriac to continue and forge ahead despite this news was the hardest thing I have ever had to do.

Novartis, your company has a reputation for compassion, and I plead with you to show that compassion when this trial is over. Give those of us who cannot afford to buy this miracle drug (of which I am the #1 cheerleader) a chance to stay on the medicine and continue leading lives that are once again worth living.

I am terrified that you will snatch it away and I will be left to once again have my MS run rampant and destroy my body. Please, please don't take it away.

From all of us who have helped you make Gilenia a success, we're just asking for a little compassion. Not too much to ask, is it?