My MS Drug Story

Disclaimer: I have come to the following conclusions on my own / with the consult of a specialist and do not suggest pursuing anything without consulting a doctor or qualified professional.  (:

I came to my diagnosis with multiple sclerosis literally overnight.  Well, not even overnight.  Within a few hours of my first of 20-something MRI's I was given my diagnosis of MS.  Of course we then spent months and many doctors deciding if that was the right diagnosis and all of them have concluded the same: aggressive, severe MS.

One day I will write about my diagnosis story.  But today, we get to talk about drugs.  Fun.

As we all know, there is no cure for MS.  However there are a few medical drug options to help with "managing" ms, meaning they help slow down the progression of the disease, in a hope to help eliminate further lesions on the central nervous system. 

The first neurologist I met with after my hospital diagnosis was the first doctor I spoke to about MS management drugs. He explained very high level the different types and suggested a drug in the interferon family.  Since the drug sales rep guy for Rebif had just been in his office, he suggested this one, with the line "it would be easiest to pursue since he was just here and we have a good relationship".  Looking back now I do wonder / can probably guess he got a kick-back from the drug company for that prescription write-out. 

So I signed up with Rebif.  A nurse came to our house and taught me how to use my auto-injector.  Eventually after a few weeks I got the courage to inject myself.  3 evenings, Tuesday, Thursday and Saturday, were reserved for rebif.  The side effects were wonderful and by wonderful I mean awful.  I would get huge welts where I injected the medicine on my thighs, butt and arms (I came to appreciate my thick thighs really quickly with this drug though).  Nausausness and just overall feeling yucky followed for about 12-24 hours after taking the drug.  It was worth it, because it was suppose to help me.

(If you are on rebif, I highly suggest putting an ice pack over the injection area before and after injection.  It helps with swelling as well as the hurt from the drug.  Just a tip :D)

9 months went by, injection after injection, paying bill after bill, when we finally came to the conclusion it was not working.  MRI's showed lesions and activities.  "It" was progressing.  

So we decided to purse our next option: the lovely and by lovely I mean really awful drug of Tysabri.  Dont google the side effects of Tysabri unless you want to scare yourself; it's not pretty.  And by not pretty I mean it can cause a brain disorder than can kill you.  NBD.  

But I didnt really have any other option at this point.  So we took the risk and I started Tysabri in January 2013.  Tysabri is a once a month infusion.  The hospital has an infusion suite with these really comfortable chairs and you get juice and snacks at the end of your session.  I did this for three months.  April came through and I was so sick that when I came to the infusion room in my wheelie, the nurses wouldnt even administer the drug until my specialist saw me.  This led to a lot of testing and MRIs.

 (If you are going through Tysabri infusions, I highly suggest bringing good reading materials and wearing bright clothing, aka what I so clearly did as seen in this picture).

A day or two went by and the specialist said all looked good so far and to go ahead and come in for my April infusion.  Following doctor's orders (because why should you second guess your doctor?) I came in and got infused with a month's fill of Tysabri. 

Three hours later Im in bed, resting, when I get a call.  It was my specialist's nurse, calling to say the last blood results came in.  And guess what?  I had developed anti-bodies to Tysabri.  If only we had waited a few more hours for that last test.  Damn it. 

The next few months I grew really sick and spent time in the hospitals and it went by kind of fast as we tried to discover what was wrong.  Once things settled down in July, I met with my specialist to discuss yet another MS drug option.

This time I was going to join the pill gang, starting on a daily pill called Tecfidera, a drug that had just been approved in March.  The side effects were to be mild, just some nauseous feelings and flushing.   I was surprised for the first few months I didnt experience anything.  I thought perhaps we had found my answer.  And it was in a pill...no needles needed!

But...then I started to feel really yucky.  By this time I had learned to listen to my body pretty well and could pinpoint which drug was causing what.  And tecfidera was making me feel like (excuse my language mom) shit.  

So after a few months, I had yet another conversation with my specialist...possibly this drug wasnt working.  And possibly we should stop it since I wasnt handling it so well. 

And then came the monumental moment.  I looked back on my career as a MS sparkler and realized I was injecting and infusing and swallowing these horrid drugs with horrid side effects with no results.  The purpose they were to fulfill, that of managing my MS, was not being met.  

As each day went by without taking a MS management drug, I grew stronger.  I felt better.  My body was detoxing from all the months of liver abuse and I was feeling good.  

I started to question: were these drugs worth it?  They hadnt been yet.  What was I going to do in the future?

My specialist obviously wanted me on another drug asap, like yesterday.  He suggested Copaxone, a very common drug, a daily injection, one with less side effects.  It sounded good.  Until I realized its chances of working were about 30%, in a normal person.  Which made me hesistant on the chances of working on me.  We hadnt pursued it yet because it's considered "weaker".  But at this point, it was my only option next to low level chemo.

From my point of view, this was a high risk, low reward situation.  The high risk was monetary loss (due to paying for the drug) and damage to my body.  The low reward was in the hopes that it might possibly work. 

Maybe. It might work.  It probably wouldnt work.  

I know we're suppose to be optimistic and all but given my track record, how could I be optimistic about a drug?  

I delayed as much as possible but the day finally came when I was cornered.  My specialist wrote the prescription and told me I needed to go on it.

And I said no.

I dont think he is used to his patients saying no to him.

He asked if it were the needles - nope.  He asked if I needed financial help - I said when it comes to my health, finances arent a concern.  He then proceeded to tell me that I didnt have any other options, I had to be on a drug.  I had to inject myself daily for 9 months (which is how long it takes to determine if this drug is working).  I had to.

Yes, in his eyes, I had to.  It was a liability.  

But in my eyes, it wasnt worth it.  

He explained to me that yes, taking this drug for months is a risk, because there is a high chance it wont work.  But I'm taking an even bigger risk by not taking it. 

Which I completely agree with.  I was taking the bigger risk.  But to me, the reward was a side effect free life, something I craved, something that I needed.

He made me promise to think it over for a week and give a final answer then.  I agreed to that and really did pursue my thoughts for a week.  

But my answer didnt change.  I was not going to, at this time, start a new drug, specifically Copaxone.

A few months pass and Im feeling good about my decision.  I feel stronger, my body just feels more whole.

And then I had to get a MRI.  And guess what ladies and gents?  I had new lesions.   I had new activity.  I had new symptoms.

Of course meeting with my specialist was just really wonderful.  I knew what he was thinking: I was reckless, and look what happened. 

But really, chances are, these lesions wouldve come regardless if I was on Copaxone or not.  And I think deep down he knew/knows that. 

So yes, I'm recovering from active lesions currently.  And I'm still content with my decision.  I am starting a procedure outline with plasmapheresis in hopes that it will help manage the disease some.  Currently I am starting once a month procedures and we will determine if we should go with more or less as time goes on. 

(Had my first management plasmapheresis session today...blood. everywhere. lovely)

My MS drug story is crazy.  It feels like years when it's been only months. 

Im quite possibly taking more years off my life by not joining the ms drug movement.  But, this way, I get to live.  I get to spend less time in bed and more time in the sun.  My MS is growing yes and its awful.  And I know I cant go ms drug free forever.  But I'm willing to take the risk currently for my overall well-being.

So why am I sharing this MS drug story?  It's DEFINITELY not to make anyone who is on a MS drug feel bad or think about coming off it.  Not at all.  If you have found a drug that works, praise the Lord and stay on it.  

But do your research.  Pursue a second opinion.  Make friends with your pharmicist.  Dont just take a drug because your doctor is besties with the drug rep.  Wait till all your bloodwork comes back before doing a monthly infusion.  Talk to your doctor if your side effects are creating more trouble than the designed help it is supposed to bring.  

And also, hope for more research.  Id be on a drug right now if it had a chance of working higher than 30%.  I WISH I could find a drug that worked and slowed down this disease.  I wish there were more therapy options, more procedures available.  I wish there was a cure.  

My life is dependent on all these hopes and wishes.  Well, not my life lived but the longevity on my life.  My quality of life.  I can only go so long before another big one hits again.  Im thankful that this last episode (optic neuritis and lost of sensation in my right arm) is minor (minorish...it's not fun hah).

This is why I'm doing this.  This is why there is even a "The Sparkled Life", why I put my life out there for everyone to see.  I dont want to be defined as that girl with MS.  But if it means awareness, if it means creating hope and support for those that need it, if it means finding something to help my search in slowing my disease down, then I'll keep doing it.  

Because we're worth it.  

You're worth it.

I'm worth it.

Love, Eliz

Hope

This word has been the banner of my MS story, the word behind the sparkle life. 

But what exactly are we, I, hoping in at this point?  

I receive emails daily filled with news of promising drugs on the horizon.  Stem cell research is becoming something more tangible daily.  

But the realist in me see's the whole picture: I see Obamacare and the hiccups it will cause in research and development in the medical field.  I see the longated process that these drugs must endure due to money focused insurance and drug agencies.  I see theories and ideas yet no promises or cures.  

Most importantly, I see my body rejecting medications and procedures that are currently the promises of hope that are on the market today.  

Yes, it's happened again; the third ms management drug I have tried in 18 months, Tecfidera, has been rejected.  I'm now moving to my fourth drug, Copaxone.  It is seen as the "weakest" ms management drug, the reason we have not tried it as of yet.  However, before taking more extreme measures, we are giving it a shot with a MRI scheduled in January to see if any progress. 

(Oh and the most fabulous news about this is that Im moving from an oral drug to a daily injection.  Now I didnt really like Tecfidera and I dont mind needles.  It's just a mind over matter situation I have to work through). 

The most frustrating thing is that I am encouraged to hope in the future of medicine for the help in controlling my disease or even more promising, a cure.  Yet I have no signs so far that even if these things were to arise that I would be able to respond.  

The drugs that do work, the drugs that allow me to "look so good" and have an actual quality of life are parkinson's drugs.  And my day to day life is held together by these drugs.  Yes, I may be getting stronger but goodness be if I forget a dose.  

And though these drugs bring me support throughout the day, they do not heal, they do not stop the pain.  It pains me to do anything human: to bath, the brush my teeth, to eat...even typing this is a challenge as my hands struggle to remember the keys that I have graced 1000's of times.  

This leads me to question: where does my hope lie?  What can I hope in that will allow me the grace, courage and strength to continue living with MS?

The easy answer: God.  People say that God does not give you more than you can handle but I dont believe this.  I believe God sometimes gives you more than you can handle so that you are reminded how much you need to dive into your spiritual side.  How much you need that spiritual support.  I hope in my faith, in the afterlife. 

I hope in love.  I hope in the love of my family, my friends.  That through my experience I can learn to cultivate deeper our relationships and learn from their support. 

I hope in myself.  I hope that I am strong enough to continue smiling and sparkling despite the let downs, the discouragements, the pain, the tears. 

I hope in the MS movement.  The drugs and procedures may not work for me yet they will work for 1000s of others.  And if I can be a voice on their behalf, well how beautiful is that?

I hope in the sparkle.  I cant really explain what the sparkle is.  It varies from the perfect cup of coffee on a bitter day to a postcard in the mail to a smile through the tears.  Sparkle isnt just glitter on a paper.  It's a way of life for me.  And I hope in it.  Because it makes me happy.  

And I have come to find that happiness is one of the best drugs there is.  

Hope isnt easy.  In fact, I would say to hope is one of the hardest callings a human is called to.  For it is a surroundering; the understanding that right now totally sucks and there isnt much that can be done except hope in things that we possibly cannot control that it will get better.  

Hope isnt a promise.  It doesnt guarantee.  It can disappoint.  

Hope is believing that life is too beautiful to believe that today's hardships outweight tomorrow's beauty.  

Hope is the reason.

And together lets never let go of that hope. 

Love,

 

"We must accept finite disappointment, but never lose infinite hope." - Martin Luther King, Jr. 

Team Sparkle Bike MS: City to Shore 2013

Yes its that time of year again...Team Sparkle Bike MS: City to Shore 2.0!!

While the participants of Team Sparkle start prepping their butts for the long bike ride, we are again looking to grow our team to VIP status with the help of YOU, the lovely donor sparkle supporters. 

Last year Team Sparkle raised over $12,000 through a lot of wonderful donors.  This provided Team Sparkle with the encouragement and hope needed to bike the 185 miles from Philadephia to Ocean City, NJ and back.  

The whole overall experience was, in a way, breathtaking.  For me personally, each $1 donated meant someone believed in my fight, in my hope.  It also was amazing to witness not only my loved ones but 1000s of strangers sacrificing a weekend to bike for my cause.  

For pictures from last year's ride, visit: https://www.facebook.com/media/set/?set=a.645920224980.2074072.144900133&type=1&l=68be5f339c

The money donated did more than give me hope; it went straight towards improving my quality of life.  A portion of the money raised through Bike MS rides throughout the country goes towards research and development, specifically to find medicines that help manage MS. 

Over the past year I have tried 2 MS management drugs, not responding to either category.  This was extremely discouraging for the next option was the Chemotherapy levels (obviously something to be avoided for as long as possible).  

But, with the help of the money from the MS Society - Bike MS, a new drug was approved called Tecfidera on March 21st (my 1 year MS anniversary...convenient).  This drug is oral (meaning no needle injections three times a week or monthly infusions!!) as well as very promising.  Im in my first month currently and hopefully in the next few months will know the affect it is having on managing my MS.

For those that donated last year, thank you!!  It may have only been $30 but that generous amount helped provide me with medical stability and hope, as well as kept me out of the chemo world.  

This year's ride is starting out even more special as Bike MS: City to Shore has asked me to be involved on a few different levels with regards to promotions.  

I was humbled to be a part of their postcard campaign (see below) as well as they asked me to provide a few words at their opening meeting, all around the theme of "Why we ride".  I've had the opportunity to get to know some of the members of their team and am honored to be volunteering along side them.  They are just fabulous!!

This year Team Sparkle's Goal is $5000 and our team members are Brian (my daddy), Connor (brother), Kevin and John (twin brothers), Tonya (my mom aka Captain Team Sparkle) and myself (yay!!!).  

There are three ways in which you can be a part of Team Sparkle:

1. Donate to Team Sparkle (visit here for more information: http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?team_id=349549&pg=team&fr_id=20331)

2. Promote Team Sparkle (create awareness by sharing Team Sparkle's information and donate page)

3. Join Team Sparkle in riding the race yourself!!  There are a few different routes to choose from and we would love to have additions to our team!! (visit the donate page for more information: http://main.nationalmssociety.org/site/TR/Bike/PAEBikeEvents?team_id=349549&pg=team&fr_id=20331)

Anyway you choose to be a part of Team Sparkle is greatly appreciated!!  I look forward to seeing the rewards from this campaign and sharing the updates with you!

Love and thankful,

 

To my Fellow MS Sparklers

When first diagnosed with MS, I stayed away from google and the like.  I gathered information from my doctors and the National MS Society and left the rest at the door (the rest being blogs, forums, information Q&A's).

Part of this withdrawal from the MS community began with a bad experience at a MS event.  I was recently diagnosed, was recently home from the hospital and was recently invited to a "Newly Diagnosed MS Support Group".  I went with high expectations for the event (another expectation ruined the day moment) and left with distaste and misfortune. 

I was the youngest person there, the only one with a then so sexy walker.  Most of the other MS patients had been diagnosed for a year plus.  Some people there didnt even have MS, some people there to complain.  Most everyone there spoke about how MS had completely changed their life.  All of this combined scared me right out the door and into a "keep my MS to myself" hole.

I was naive.  I was of the hopeful thinking that MS was not going to change my life, that I would return to DC, return to my job, return to my life.  I wasnt going to need the lawyers advice on how to apply for disability (this lawyer later turned out to be a great asset when I realized I did), I wasnt going to go to support groups for MS and I didnt see the need to work to create MS awareness.  

So completely naive.  Or was it hopeful?  It could be argued both.

Then I had my second relapse.  And everything changed.  I felt so alone in my MS journey.  One night I searched "multiple sclerosis" through my tumblr account.  Reading the stories, the journeys of other MS patients, was at first scary for it wasnt pretty; but eventually it made me feel less alone, encouraged in my own journey and wanting to share my story to create a more friendly MS awareness world.  

And here we are.  The Sparkled Life was born and I've had the chance to learn of so many other MS Sparklers' stories, all leaving me with a warm feeling in my heart.  Though every case of MS is different, the fact that there is someone out there that is walking this journey as well is encouraging.  I wouldnt wish MS or chronic illness on any person.  But for those who have been gifted the hard blessing, I'm glad we have the means to be in it together.

A few nights ago I took to Instagram for some answers to a few MS specific questions I had and the response was uplifting and helpful.  I thought today, why not try the same here?

Below are a few questions that I've come across myself; if you have MS, know someone who does or just want to give some input, all is greatly appreciated!  Feel free to either leave a comment or email me at thesparkledlifegirl@gmail.com.  

If you are currently struggling with MS and just want someone to complain to, the offer is the same.  Its a rough path; no one should have to do it alone.  There is a strong MS family and community.  We're like a rose bush: we have thorns and pointy parts but in the long run, we are a beautiful community of flowers (hows that for corny?).  

But for real, you are not alone.  You are a fighter, you are strong, you've got this.  There is hope, there is love.

Love,

Questions for MS Sparklers Part 1:

1. Tecfidera - On it?  Tried it?  Like it?  Thoughts about it?  Experience symptoms/side effects?
2. Fatigue and Insomnia - Fatigued by the day, insomnia by the nights.  How to switch it?  Suggestions / words of wisdom?
3. Celiac Disease and Gluten Intolerance - have you seen a correlation?  
4. Migraines / Headaches - Do you get them?  Ways to prevent besides pain relievers?
5. Have you ever felt pain in a place where you have a lesion (such as along your neck/C-spine)?
6. How do you explain to friends/family about the inconsistency with MS (such as yesterday was good, but today I have to cancel for it's bad)?
7. Any blogs / sites that you would recommend that have been helpful and/or encouraging to you in your MS journey?
8. What is one area of research with regards to MS that you would like more effort being put into; such as new exacerbation treatment therapies (ie steroids, plasma exchange, IVIG), new MS management drugs (Rebif, Tecfidera, Tysabri), new symptom medications (klonopin, gabapentin), new symptom treatments (physical therapy, acupuncture, massage), new answers as to the "whys" (why have MS, why have relapses, etc)?