Welcome Aubagio

Some big news this week out of the FDA this week! On Wednesday, the Food and Drug Administration approved a Sanofi pill to treat multiple sclerosis (RRMS). This makes it the second oral therapy player in the MS drug market. Not too shabby.

The good news?

• Research from clinical trials says that the relapse rate for patients using Aubagio was about 30% lower compared to those taking a placebo (or, sugar pill).
• It’s cheaper. Sanofi states that the drug is estimated to cost about $45,000 a year, which is lower than Copaxone, Avonex, etc. Aubagio is guessed to be about 22-28% less expensive than Gilenya. 
• It’s a pill. Options are good for those living with MS. 

The not-so-good-news?

• The drug may cause fetal harm and, as such, women must take birth control during treatment. And…
•   …the boxed warning includes potential liver problems, including death, and risk of birth defects. 

I for one am grateful for new MS drugs coming out on the market and that MSers have more options. Granted, it goes without saying, I would much rather it be that no one get diagnosed any further and that we just land on a cure. 

What do you think about the news of Aubagio's launch? About MS therapy in general? I would love to hear from you. 

P.S.

To read more about Aubagio, check out these articles:

1. Press release from the FDA (read more here)
2. Wall Street Journal (read more here)

Best always,
Christie

Gossip from the Peloton

Well, all right. Our peloton may only have two riders but we’ve got a lot to say!

First things first. Thanks so much for your support thus far! We have some very thoughtful friends and family out there and we are so grateful for your donations to the National MS Society. Thank you!

Have y’all heard of Phil from the Amazing Race? He is one of our inspirations for doing the Bike MS. I tweeted about Team Luca’s debut and Phil re-tweeted the message! How freakin’ awesome is that?! He’s like my BFF now. Just sayin’. If you haven’t heard about his film “The Ride”, do check it out. It’s absolutely incredible. Back in 2009 Phil rode his bike across the country and raised $500,000 for the MS movement! "The Ride" is a documentary about his journey. 

In the meanwhile, I came across this video of a really fascinating product designed by two Swedish women, The Invisible Helmet. When you have 3 minutes to spare, check it out. As they say in their video clip, “cars are so yesterday”. It’s….interesting.

For those of you interested in joining Team Luca, we’re ready for ‘ya! You can sign up through this link. And, you’ve got options. 150 miles too much? You can always elect something less intense like 100, 30 or 15 miles. You can join Team Luca’s peloton along the route. There are some fees involved and here is some information.

• The 15-mile ride has a $25.00 registration fee. Plus, you are required to raise $150.00. That’s easy!
• The 30-mile ride has a $60.00 registration fee. You are required to raise $400.00. Again, that’s easy!
• The larger rides (100, 150 miles) involve bus rides and all that. You can find more information here.
• Can't ride and would like to make a donation? Click here to do so. 

And, just for fun. One of our fans (wink) shared this photo with us. It’s a bike shop in Germany. I don’t know where it is but sure do love this photo. There are lots of Oma bicycles hanging on this building! Smile. This brings up lots of memories of my Oma riding her bicycle in Holland, until she was in her early 80's!

That's it for now. We are busy riding our legs off in this fight against MS. Be sure to check back as I will post updates throughout our "training". 

Best always,

Christie

Inspired by Phil from the Amazing Race

Thanks for the mention Phil! 

Totally inspired by Phil from the Amazing Race, we just formed our debut cycling team, Team Luca, for the upcoming Bike MS Bay to Bay in Southern California! More details to come on our "training". In the meanwhile, if you'd like to join our team or make a donation, check out our page. 

Thanks for the mention on your Twitter page Phil! 

Be well everyone,

Christie

Don't Panic?

It was hard not to panic when I got my first bill for my Tysabri treatments. Any guesses on how much it costs, before insurance and the Active Access Co-Pay Program kicks in? I didn't sleep a wink that night, worrying about what would be covered and what would not be. I should have been wearing my "Don't Panic" button because now everything seems to be falling into place. Whew!

I Should Always Wear the Don't Panic Button

Gallop. Do you believe in magic?

Once you're in it, it's okay

I just finished Augusten Burroughs’ latest book, “This Is How: Proven Aid in Overcoming Shyness, Molestation, Fatness, Spinsterhood, Grief, Disease, Lushery, Decrepitude & More. For Young and Old Alike”. While I do not agree with his point of view on everything, one chapter in particular stuck with me, “How to Be Sick” and in that chapter, one passage hit home:

“Once you’re in it, it’s okay.”

Whoa.  Profound. How does Mr. Burroughs know this about me?

Is this true for you?

When I first was diagnosed, I suffered a lot with imagining how bad everything was undoubtedly going to get, allowing the anxiety to swell my brain yet when I finally reached that point, it never ended up being all that bad.  It was (and is) worse in my head.

Allow me to share. When the first pang of pain came on in my left eye and the colors got all whacked out, I thought my life, my visual and artsy life, was over. I manifested in my head that I would go completely blind in that eye or, at the very least, I would not be able to enjoy colors the way I “normally” did. I propelled my anxiety into even worse things and went bonkers thinking that I’d go completely blind in both eyes. I stressed that I would not be able to photograph or color or create or read or drive or watch the sunset or see my loved ones. Well, over a year later, I’m in it and it’s not at all what I feared. The optic neuritis never turned out to be as bad as I imagined. It was so much bigger in my head. While I have some compromised vision, it’s stable and manageable and not at all the utter dread I thought it would be.

I am now within my MS and it’s okay.

Three months ago I switched to a more aggressive treatment, ditching the daily injections of Copaxone for a monthly drip of the Big T. Tysabri. I remember my fears very clearly. I allowed the anxiety in my head to get massive. I imagined that the infusions would be excruciating. I never had an IV drip before so what did I know. In my head, I saw black and blue marks on my arm. I saw myself in pain with the insertion of the IV needle. I was convinced that I would suffer in such a major way that I would need sedatives to survive. Don’t get me started on what I imagined about the side effects. I built a horror story in my head.

I had my third infusion last week and it was another without incident. These infusions are so uneventful that I want to scratch my eyes out from boredom while I sit there for two hours. Not at all what I imagined so many weeks ago.

I am now within my MS and it’s okay.

Don’t get me wrong. I do realize the seriousness of my MS and am very aware of what may (or may not) happen to me and what symptoms I may still meet. But, as Burroughs describes in his book, I do not want to accept them in advance. And, I will try to not empower them. With this, I want to greet my new symptoms waiting to meet me. “Well, you’re new around here and I will adjust to you and then you will no longer be new but just familiar.” It won’t be long after that I say again...

I am now within my MS and it’s okay.

--

Is this true for you, this notion of building things up to be bigger in your head rather than how it turns out to be? I would love to hear your stories.

Hope you’re well.

C

Marlo Rocks!

Every time I read something written by Marlo Donato, I am reminded that she is indeed one of my MS heroes. She should have a cape, preferably one designed by Donna Karan.

She recently posted five reasons, one a day, Monday through Friday, on why companies should hire folks with multiple sclerosis. Her list is great! They range from cost effectiveness and time efficiency to delegating and sharing knowledge.

Cheers to some great articles! I, for one, appreciate the message of empowerment conveyed in each of these five posts. Thanks Marlo!

To read the articles, check out her blog here: http://marlodonato.tumblr.com/

Ciao for now.

Christie