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

My First Date with Tysabri

Infusion without incident.  That’s how I would describe my first Tysabri treatment. It was not terribly exciting, kind of boring actually. My nervousness was more eventful then the actual infusion and its aftermath, or lack thereof.

We arrived to my appointment about 2-3 minutes late and had to wait for some time before entering the Infusion Room. As my sweetie and I sat, my stress and anxiety began to swell. Did we arrive too late? What if they won’t take me now? What if I have to reschedule this infusion? This will force me to reschedule all the subsequent appointments I already have booked because they must be every 28 days. It would be great not to have to go through this infusion because I am really nervous. But not nervous like I’m about to give a solo performance at a concert but I am still nervous. And, how is Tysabri pronounced anyway? I’ve heard it at least three different ways. TIE-SA-BREE, TEE-SAH-BREE, TE-SAY-BREE? TIE-SAY-BREE? TEE-SAY-BREE?

Christine Germans?!, a voice called out, interrupting my neurosis. Yes! We stood and grabbed our belongings which for me consisted of a 20-pound tote filled with my laptop, Kindle, notebook, power cords, cell phone, camera, wallet, papers. You know, the type of stuff one needs to pass the time during an infusion. First infusion?, asked Nurse Jackie (true story) as we walked towards the Infusion Room from the Waiting Room. Yes, I replied. As we entered through the Infusion Room doorway Nurse AJ handed me the Tysabri booklet. Read the pamphlet, she demanded but in a nice, nurturing yet this is a serious situation sort of way. Okay!

Read the pamphlet!

Nurse AJ and Nurse Jackie taking care of me

The Infusion Room was not very exciting. The décor consisted of a nurse’s station, about six or seven infusion lounge chairs and a bunch of IV stands. Not much else. I remember the floor was nice. Laminate wood flooring. Homey touch.

We walked over to my chair, my relaxing spot for the next two hours. Nurse Jackie instructed me to read the Please Don’t Sue Tysabri card while she gathered up the gear for my infusion. I hopped in the chair while Nurse AJ got me warm blankets and pillows. This will be very relaxing. Cozy, I thought, as I stretched out and cuddled up.

Lidacaine?, asked Nurse Jackie as she prepped my forearm for the IV.  Huh? What’s that?, I asked, absolutely clueless about IVs because I’ve never had one before except for outpatient surgery over 15 years ago. That was way too long ago and my MS brain erased that experience right out of my memory bank. Lidacaine, explained my sweetie and Nurse Jackie, is to numb the area to prep for inserting the IV needle. Hmmm. So, that would be two needles? I reasoned the pros and cons of an additional pinch on my skin and decided that if I could handle daily injections for nearly two years, I could handle a quick needle for the IV.  No. Let’s go for it.  Just one pinch please! And in went the needle…

Yikes. Okay. That hurt. But it was very short lived. By the time I registered the pain of the IV needle it was all over. I didn’t even get a chance to slow down my breathing and do some quick visualization exercises. Later I came to realize this was indeed the worst part of the infusion.

Nurse Jackie hung up a bag on the coat rack next to me and popped some tube into my IV. Is that it? Is that the Tysabri (te-SAY-bree)?, I asked, not wanting to miss the moment of first contact because we brought a video camera to capture everything. Saline first, she said, the pharmacist is mixing the Tysabri (tie-SA-bree) in the other room. While the saline dripped through, I chatted with my sweetie who sat right next to me. Eventually, Nurse Jackie placed the Tysabri package on the table next to me. It’s neon yellow! I observed quite loudly. No, that’s just the packaging Nurse Jackie informed me, giggling. How embarrassing. Sorry, it’s my first time. It looks like some kind of magic potion.

The magic potion

After a few moments, Nurse Jackie hung up the Tysabri bag on the IV rack and connected the tube to my IV. Tysabri (tie-SA-bree)? Do your magic, I said. I expected Tysabri to announce itself as it dripped through my veins. Here I come!, I imagined I’d hear. Yet I felt nothing so I tried to relax into it.

tie-SA-bree

No such luck. I was still distracted as I waited to feel fire in my veins, pass out at some point along the way or maybe develop a headache but nothing. It was all very uneventful. Yet, the seriousness didn’t evade me when I looked up at the Tysabri bag. This is some crazy shit, I said out loud. Who could have imagined that I’d be sitting in an infusion room getting pumped with Tysabri because my initially prescribed MS drugs weren’t strong enough to deal with those stupid lesions?!?!

All this in the first five minutes. This is going to be a long two hours I thought to myself. 

C

The MS Buzz #7

The MS Buzz #7 now available! Last week’s chatter? Non-traditional MS treatment, Vitamin D, Flo Fox and more famous folks with MS. Click here to read more:  The MS Buzz #7.

2010: Exciting Progress Made in MS Research

Friends,


The National Multiple Sclerosis Society just published this great news detail on the progress made in 2010 in the field of MS research. Gilenya, Cladribine, Teriflunomide, anitoxidants, CCSVI, intestinal parasites, myelin repair, stem cell-based therapy, Ampyra, Nuedexta, depression, environmental factors, and so much more. Click here to read their recap. 


No doubt, 2010 has been an amazing year. Inspirational and hopeful.  


Best,
Christie

MS Barometer Reveals Unequal Treatment in Europe

Hey Everyone,


I just read a brief article about the European Multiple Sclerosis Platform (EMSP) "MS Barometer" results and have to ask 'how can this be right?'  I am referring to the fact that not all EU citizens have equal access to MS treatment. I think I always knew this yet I was not aware how bad it is.  One statistic in particular really bothered me...'less than 2% of MS sufferers in Poland have access to the standard treatment.' Similar facts in Romania, Bulgaria, Slovakia and Hungary.


To read the article, click here:  Survey reveals huge disparities in MS care across Europe.


First off, I am UBER grateful for the treatment I receive for my MS and UBER grateful for the health care benefits I receive to pay for everything. I am very lucky. But, how can I help my MSers in Europe? It hurts my heart to know that there are folks out there in pain, suffering because services and care are not available. It's just not right.


Today, I am sad.

This is a seriously big deal!! FDA approves first oral drug for MSers! http://tinyurl.com/35xrzre

New Webinar Series by Can Do MS

This past week, I attended one of six webinars hosted by Can Do MS.   I enjoyed Dr. Randy Schapiro's  "Emerging Therapies: Understanding MS Research" while relaxing in my local coffee shop and learned a lot about what it takes for a drug to get to market and how important proper clinical trials are.  Dr. Schapiro has a great perspective on Tysabri, FTY720, Vitamin D, and CCSVI therapies (amongst others) and if you'd like to watch the webinar, Can Do MS has it archived on their website.  The coolest part?  Dr. Schapiro co-authored the "Neurology" chapter of "MS: The Questions You Have, the Answers You Need" with my very own neurologist!!!  Way cool.

Click here to learn more about the webinars! 

Hope to see you there!

C

Touching Video

I recently came across this very touching video of a young woman living with MS in Canada.  She wants to be tested and treated for the phenomenon called CCSVI (chronic cerebrospinal venous insufficiency).  Thanks for sharing Judy K!

Here's the video:  Kara Byrne's Video on You Tube

And, here's information on CCSVI:  Click here for more information on CCSVI


Thanks,
Christie

My First Week of Daily Injections

During my first week of taking daily injections of Copaxone, I have learned a lot, I have accomplished a lot, and all the while surviving it all!

Here is my list of “Top 10 Things I Learned During My First Week of Taking Daily Injections”

10.  The cats will play with the Autoject 2 needle cap once it is released so I have to be careful to dispose of it properly.  They love playing soccer.

9.  Finding the right time and place for injection is important.  For me?  The bedroom since it’s equipped with a sound machine.  I find listening to rain to be very calming.  Until the neighbors’ music is turned up – argh!  Turn it down &*$%^, I am trying to meditate!      

8.  Definitely use the daily planner provided by Shared Solutions to keep track of injection sites.  It’s only been a week and I’ve already fallen out of rotation, skipping over the thigh and straight onto the stomach.  I really like following directions and do not like falling out of order.  I want an A.  

7.  Preparing the syringe for injection is fun!  Seriously.  I like loading and locking the syringe into place, it's rather much like loading a gun.  I really hate guns and have never used one but this step sort of makes me feel like I am on a special mission, like a secret agent getting ready to fight the bad guys.  Agent 99 takes on MS! 

6.  Calm. Down.  Relax.  And.  Breathe.  I find that I get a little worked up just before injecting and need to remind myself of this mantra.  Calm.  Down.  Relax.  And.  Breathe. 

5.  The needle doesn’t hurt at all.  Sometimes I find myself asking, “Did it go in?  Is this thing working right?”  Then the burning arrives and I know everything is working just the way is supposed to. 

4.  Having my partner with me while I injection is UBER important, especially during these first few weeks.  On Friday night I jammed my gun, I mean my Autoject 2, and I panicked.  She stepped in and fixed everything for me. Sigh.  “Calm. Down. Relax. And. Breathe”, she said. 

3.  Taking pictures of where I inject is a great idea (thanks Anna!).  There is no way I will remember where I inject, no matter what I write in my daily planner.  I will try this during Week 2. 

2.  Trying not to let the injections take over your life is challenging.  I do think about it all the time, growing anxious about accidentally skipping a day.  Yikes.  Maybe an alarm will help.

 

1.  Save the most important thing for last, that’s the intention of this list.  The reason why I take Copaxone every day is to slow down the progression of my MS.  I do not want this disease to get any worse so here goes nothing.  Bring on the shots!   

C

2 Down 14,965 to Go!

On Day Two of taking Copaxone shots, I came to the realization that I have A LOT more shots to get through in my lifetime!  Assuming I live to the ripe old age of 82, I have 14,965 shots to go.  Rather daunting isn't it?  I would like to put in my vote to fast track FDA approval of the first oral MS drug please!

Good Grief!

C  



06/29/10
Journal Excerpt

My last weekend without shots…

Blog title courtesy of my good friend Mel

So, should I celebrate?

Just the other day my shots arrived in the mail.  They came in a HUGE box secured inside a Styrofoam cooler with lots of ice packs.  My Copaxone traveled safely!  I have my training session on Monday night so this weekend marks my last weekend of shot-free life.   Is this something to celebrate or something to prepare for? 

Preparing for life with shots seems perfectly logical.  I can plan the time and place of treatment and create a chart tracking site injections.  I love charts and it’s important to rotate to minimize site injection reactions.  Mentally I am not prepared at all and realize that I am scared and anxious to get started on treatment.  Take. Deep. Breaths. And. Relax.  I will chant this all day Monday as I prepare for my very first shot of Copaxone.

Celebrating for my last two days of shot-free life certainly seems like more fun.  I can have a party (although it would be challenging to pull all of my peeps together at such short notice) or get drunk and dance all night.  Hmmm.  Or, I can get my car washed, have a massage (by the world’s GREATEST masseuse), have a lovely lunch with my sweetie, watch the USA vs. Ghana soccer match, do some shopping, grab the latest Tom Cruise flick, start the art project that I’ve got in mind, go for a power walk, and maybe relax on the beach.  That sounds fantastic!  No need to party – I’ve got the perfect weekend already planned to welcome my life with shots.  You see, I am much more interested in slowing down the progression of my MS than worrying about how to celebrate being shot-free.  At least that's what I'm telling myself.  Bring it on!         

C

What the heck am I supposed to do with this thing?

When we came home from work the other night, a white package was resting on our doorstep.  Yay!  A present!  I had been shopping on line and was super excited that this might be one of the things I ordered.  Cool!  “That was fast”, I thought to myself.  I had just ordered stuff the day before.   I opened the package and discovered that it was an Autoject 2, an automatic injection device.  Oh yeah.  My injection trainer mentioned the auto injection would arrive in a white envelope.  I’m to hold onto this until my training session.  Where is my order from Amazon?

And what the heck?  According to the instructions, there are 9 steps to using this thing!  First I have to determine the correct needle adjustment.  Huh?  Next I have to prepare one dose and unscrew the syringe housing (there is a figure drawing to help me navigate). Third, I have to set the automatic injection and make sure I do not press the blue firing button.  Whoa.  I don’t want to shoot something accidentally!  Fourth, I prepare the device for injection.  How fun.  It’ll be like when we played doctor when we were kids.  Fifth, I select the injection site. Not fun.  This is the part where I choose the part on my body where I’d like to administer the shot.  Sixth, I inject the drug.  This is when I press the blue firing button (le bouton bleu).  Ouch?  Not sure if it will hurt.  My good friend Mel says it feels like a bee sting.  A bee never stung me.  Does it hurt?  Seventh, I remove and dispose of the syringe.  Eighth, I clean my Autoject 2 and Ninth, I store it safely. 

Luckily, my instructions are also available in French so I can take this time to get more familiar with the language I learned in high school and college.  It will be a GREAT distraction.  So here goes nothing!  Me and my Autoject 2 pour seringue en verre (for glass syringe) are ready for training!

C

Timely and Accurate

Just about every day I browse through the National MS Society website, soaking up information about the disease, and this morning I was reminded about the importance of a timely and accurate diagnosis.   There are two very important reasons for this.

First, finally getting a diagnosis is a relief.  No more worrying about other diseases you may have – you finally know why you’ve been so uncomfortable and frightened with symptoms.  This is not necessarily an issue for me because I’ve been living with these pesky symptoms since July of last year.  Needless to say, I’ve adjusted.  And, because I was initially diagnosed with clinically-isolated syndrome (CIS), I did not get scared that it would grow into something more serious.  I only had a 20% chance of developing MS after all.  Hmpf.  

Second, we all know about the permanent neurological damage that can occur with MS, even in its earliest stages.  Starting treatment promptly after diagnosis is very, very important.  I was telling my partner last night that I am anxious to get started on Copaxone as soon as possible.  Sure, I’m anxious about starting the shots but I am even more eager to get started on treatment right away.  When will I get contacted?  When can I schedule the visit with a nurse to show me how to administer treatment?  Bring on the shots, I say.  I am ready.  I do not want this disease to progress any further.  I’d like to keep everything right where it is today, or better!  One lesion on the brain, two lesions on the spinal cord.  That’s enough thank you very much!  

I have to admit, I’m a little freaked out that the lesion on my brain showed up so soon.  It’s only been since November that it showed clean.  I cannot help but wonder if the disease will progress just as rapidly in the months ahead.  Will another lesion or two show up on my brain?  Will my symptoms worsen?  Will I still be able to walk in 6 months, without tripping and falling down?  Will I still be able to click the shutter on my camera?  Jeez.  One can go downhill fast and I try to snap out of this by reminding myself that treatment is designed to slow down progression of the disease.  Don’t go there, I remind myself.  It’s really too soon for that.  But I may end up in a wheelchair and how on earth will I get up the stairs in our condo?  Will I have to inch up on my butt?  One step at a time?  You won’t end up in a wheelchair, I remind myself.  How will I manage if I loose my eyesight?  I panic that I will no longer be able to take pictures.  You won’t lose your eyesight, I remind myself, and photography will always be part of your life.  I have this little battle with myself sometimes and I snap out of it by reminding myself that treatment really is going to help. Bring on the shots, I say!  I am ready!

~C  

Shots - Don't They Hurt?

As we studied my new scan, the doc pointed out the new lesion on my brain.  I saw it and thought, “that’s a nicely shaped circle and I think MRI’s are very cool.  And, look how big my brain is”! 

“You have MS”, the doc said.  

Shit.

Within seconds we started talking about treatment, to slow down the progression of this disease.  What we really started talking about were shots. And, he threw a lot information at me that I couldn’t catch:  Interferon Beta-1b, glatiramer acetate injection, synthetic proteins, side effects, thinnest needle, Copaxone, Betaseron, subcutaneous injection, flu-like symptoms, depression, injection sites, monitoring of liver function, blood counts. I essentially have two to choose from and it is up to me to decide what I’m willing to put up with. 

Shit. 

I don’t want to take shots. 

Don’t they hurt? 

So, how do I do this?  Is someone coming to my house every day to give me a shot?  Fat chance.  I have to do this myself.  Oh boy.  That’s a bit scary.  What if I miss?  And, tons of blood starts oozing out of the injection site?  How much is this going to hurt?  Are the neighbors going to call the police when I scream bloody murder during the injection?  And, what’s up with the flu-like symptoms if I choose Betaseron?  Am I going to be sneezing, coughing, and sniffing at the office all day?  That could get annoying and will require a lot of tissues!  And, if I choose Copaxone, how will I deal with the daily reminder that I have MS? 

These are not very nice choices. 

I would like to see your other menu please.

~C