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

I Believe in Miracles

I like things in life that can be accounted for, explained.  I like when there is a pattern to how things work and why things dont.

Which is why you can imagine having MS in the first place drives me bonkers just on the basis of not having any answers as to how, why, when, etc.

And that is what the past 4 months have consisted of.  Dead ends and no answers.

I know I expressed that I was "sick" but looking back in hinesight as well as hearing from what others have told me, I might not have realized or have shared how sick I actually was.  

There were days that I thought I was dying.  There were days that I looked like death, eyes glazed over, gray skin (lets not even talk about my gray hairs).  My sparkle had been lost, my energy gone, my zeal for overcoming obstacles with stubbornness went right out the window.  I wasnt giving up; my body was literally shutting down.

At first it was thought that this all could be tied to my anti-body response to the Tysabri infusions.  But after a dose of steroid injections and a round of plasma exchanges, while relief was found for a few days, I just kept tumbling downward.  

There was a really bad night the end of May.  I had gone to a Dave Matthews Band concert with my friend and had a great time; I was feeling good, smiley, happy.  Then I came home and like hitting a brick wall, I lost it.  It was probably the worst night of my life.  I was afraid to sleep yet could do nothing except lay there, fighting my body to keep my eyes open.  Mom and Dad took turns checking on me every hour and I think this was the night I dramatically proclaimed I was dying.  

Yes, I am known to be Miss Drama Queen at times but in all seriousness, I really did feel it.

Cleveland Clinic came and went with no further answers or assistance.  Each day was a struggle to find something, anything, that could offer relief.  

In between the week at Cleveland and before going to rehab I remember lying on my floor, begging God and everyone in Heaven for help.  It wasnt my first cry (I pray daily for help; I wouldnt be able to live The Sparkled Life without some Divine help) but it was desperate.  

I was calling on everyone, every single person I could think of by name in Heaven: family members, friends, celebrities (Heath Ledger included), historians, past Presidents and artists, Saints, all of them.  Asking them that unless they were preparing a welcome party for me that they send some heavenly help.  Please 

And this is where I get to insert a thank you to all those that prayed with me on this earth, because I know I wasnt the only one desperately praying.   

Thank you so much, for your support and hope in your prayers.

At the end of the day, God decided to answer in the way asked and sent a little miracle.  Ok, a BIG miracle. #lesbihonest (sorry had to...it just fit.  #ifyou'veseenPitchPerfectyouundeerstand)

So I was in rehab and was hit with one of my disabling migraines.  They come on so quick and so fast and are so annoying and so inconsiderate.  I was lying in my hospital bed, ice on my head, my body trembling with what we thought was spasticity.  

The doctors had put me on the most powerful drug for spasticity, with no change.  Thinking outside the box, the attending doctor thought that perhaps this wasnt MS, that maybe this was something on top of the MS; and proceeded to call a brain doctor to evaluate.  

Brain doctor came, examined, ordered a MRI (just the cure for a headache!) and then provided his thoughts: that this indeed was not spasticity but rather tremors, tremors resembling those of Parkinson's.  

What?

Excuse me, Im only 26.  Can you run that by me again? 

MRI was run and showed no MS progress (a good sign for the MS in me) which furthered the theory that this wasnt MS related.  Let's give Parkinson a try.

I was prescribed a Parkinson medicine and guess what?  Within two weeks my tremors are controlled; I'm functioning again.  Im walking again.  Im talking again.  Im eating again.  Im myself again.

Im sparkling again.

Sputnik was so excited to have his mom back for fun!

This is the miracle.  

Yes, you could argue that it was just a series of fortunate events, of the doctor thinking outside the box, the bringing in of the a brain doctor, deciding to pursue a drug usually reserved for those older than 60...that worked.  

But with my luck and with my history, I cannot deny the fact that there was some divine intervention at some point within those fortunate events.  It all was a stream of miracles.

So does this mean I have Parkinson's Disease? No.  I have Parkinsonism, which contains the symptoms of Parkinson's.  It can be caused by a number of things but the two that are considered for me are: 1, a build up of toxins in my system or 2, a lesion in the brain close to where Parkinson's develops.  

Just in case it's number 1, I'm taking specific steps to detox my body of all these ridiculous medicines I have been on.  Even if this doesn't take away the tremors, it will at least be good to know all these toxins are gone!

How do I feel about having Parkinsonism and Multiple Sclerosis?  Not entirely happy about it.  However, I am EXTREMELY happy to not be where I was before.  It was always in the back of our minds, the past few months, that maybe this wasnt MS.  That maybe it was something else aggravating it, causing additional symptoms.  And that theory was right.  So in the end, if I only have to take a pill to help maintain my current status, then I can definitely live with it. 

At the end of the day, I have to believe in miracles.  Yes, I like answers to every question and I like to know how and why things work or dont.  But sometimes you dont get the luxury of answers.  Sometimes you have to take it on faith.  Believe that, well, "everything's gonna be alright".  

And, trust in the miracles.

Love and THANK YOU to my miracle Provider and those who helped along the way,

PS: It wouldnt be a week back on my feet without a visit to our favorite burger shop, Burgatory, with my bestie who came back for the week.

The Severity of my MS is Helping the Economy.

My mom homeschools the three youngest brothers who are at home (although they particpate in a lot of public school activities...they have the best of both worlds...said from the girl who went to public high school).

Each day one of the brothers picks a "word of the day" from a SAT Word Book and it is then written on a board on the wall.  Each time a person uses the new word in a sentence gets to put a nickle in the "Chick-fi-la" bucket, which will eventually be used for a dinner out on the town.  #wesofancy

Severity is one of the first words I saw when I got home from the hospital today.  Nickel for me!

Yes, the severity of my Multiple Sclerosis case is keeping the Multiple Sclerosis Department at UPMC, my Doctors, health insurance and many drug companies in business.  While I'd much rather be keeping businesses like Massage Envy, Clinique, Michael Kors, Ralph Lauren (to name a few) in business, I am helping the economy.  #silverlining

As most of you know if you've followed the past couple of posts from The Sparkled Life, the past few weeks have been not fun, at all.  I've been very sick.

What thought was a pseudo-relapse due to stress actually turned into a blood result that came back with anti-bodies showing that my body was rejecting Tysabri.  Tysabri was the infusion that we had so much hope in, especially since it helped with lesions in the brain, my curse.  But, my body decided no.

The problem with this story is the blood result came back just hours after I had my April infusion.  So I've suffered the past however long with a drug in my body I'm allergic to.  No wonder its been ugly.

Interruption:

Remember when I mentioned that one Thursday when I went to the hospital and it was a day that made it on to the Top 5 worst in my MS career?  Well, what made it qualify was an "administrative" problem that occurred between my health insurance and switching to COBRA.  

I was assured that there would be no lapse however, once arriving at the hospital, we quickly discovered this was not the case.  And it was due to an "administrative" problem.  Please excuse me while I have trust issues with insurance companies, brokers and the like.  

This rant comes full circle.  For this "administrative problem" caused a 24 hour delay in all blood-work and testing.  A precious 24 hours that cost me being infused with a drug that I'm allergic to but didnt know because of the hour lapse in the blood-work results.  

Thank you insurance company and brokers, kindly.  

So today.  I first must say, I really appreciate my MS specialist doctor.  He is very smart and he really cares about me.  Before, yes, I might have been just an "interesting" case but now, after all our meetings, I've become a patient he just wants to be "boring" as he puts it.  He wants me to get better.  

And today, as he started his notes, he said "Let's talk MS long-term..." and trailed off in thought.  Coming back, he said in an under the breath kind of a way, "usually we dont have this talk until much later".  Usually, Tysabri is the right answer.  Usually, its a good right answer.  But my body, strongly, said no.

So here's the summary:

My body didnt take to Rebif (thus the entire class of interferons); my body is allergic to Tysabri.  Not many options left.

However, a new and positive drug has JUST come out on the market and is an oral tablet and has promising results.  Further encouragement to share my story, to create MS awareness.  This tablet was only approved a few weeks ago.  And here I am, in need of a new medicine, a stepping stone before I turn to the high risks of such medicines as chemo.  

I dont like that I have MS.  But I can see that God is using the awareness, The Sparkled Life, for good.  Let this be the proof.

So, we will wait the weeks it takes to get a high cost drug approved my health insurances (blah) and then we will have hope that I will eventually go into remission.

In the meantime........

My "I hate steroids and life right now face".  And yes, I wear that sweater a lot.  Its the perfect go-to from Ralph Lauren.

I'm still suffering from pain, tremors, the usual.  Even though I swore of steriods forever, we are giving it "one more shot".  But a short one.  3 days of steroid infusions and then no taper.  After that, depending on how I'm doing, we will discuss Plasma Exchange.  

I have a feeling this route also has to do something to do with health insurances and drug companies.  I wont digress on that.  That and the fact there arent really any other options for relief.

So...beware world.  Steroids make me very.....emotional.  And you gain weight no matter what you try or not try.

My steroid photo-shoot...1, how I really feel face, 2, Mom forcing me to smile, 3, Laughing because we're having a photo shoot in an infusion center, 4, the ugly steroids.

They've already kicked in.  Coming home from the hospital Mom had the pleasure to hear my piece on Pittsburgh drivers.  When stopping at Trader Joe's (for my favorites and roses...gotta love Mom), I even let a person who was staring at me in the old person motor cart, arm bandage and overall "I'm sick" appearance know "its so cool to stare".  I'm pretty sure I saw a smile.  Or at least that's how I'm telling the story.

The many faces of steroids.  Am I being dramatic?  No, they really do make me cray.

The next two days of steriods will actually be done in house (#princesstreatment).  They'll set up an IV infusion center and I'll just chill with the traveling nurse for an hour or so.  And we checked ahead of time, insurance covers this.

Ending words:

• There is always a silver lining.  You just have to look for it.
• I havent had steroids since having the disability of dysarthria (my speech disability).  So this should be interesting...how the words come out.
• Pray for my family...they will need it.
• Help create MS Awareness and do not give up hope.  
• Hope.  I believe in such a little word SO hard and only can remain optimistic that it believes in me as well.  I need it to.  

You all are wonderful.  Fellow MS Sparklers, MS Sparkler Supporters, random readers who stumble across....thank you.  Be thankful for your health.  Hope daily for continued sparkle. 

Love always, Eliz

PS: I woke up to bed head silly puppy this morning.  I love him.

Medicine fail

Hello dear sparklers!

I left the blog post the other day in a ... statement as I had just found out some news from the doctor that wasnt so lovely.

The doctor had called to let me know my blood result came in positive for a JC virus antibody.  What this means (in so not medical terms) is that the medicine I was being infused with, Tysabri, is now being attacked by my body.  My body is creating little cell-men that arent alowing Tysabri to do it's thing.  It is rising against it.

There is a silver lining: at least we know something.  

The hardship is again there is a medicine that doesnt work.  Again I have to go through the process of determining what to do next.  Again I have to start over. 

The great thing about Tysabri is that it really helps with lesions in the brain, where my most active and serious ones are.  That is another frustrating point for I dont believe there is another medicine that not only helps slow down the progression but also helps heal lesions.  Which is why we were so hopeful and took the risk with Tysabri.

All to find out that my body is rejecting it.

It's funny in a way.  I had all the tests that could be done the past week.  And everything came back normal range.  I'm a healthy 26 year old woman.  

Im so healthy in fact that I have an EXTREME immune system.  

So extreme that it attacks my own body (hence creating MS). 

So extreme that it attacks foreign objects (medicine to help with MS).  

It's funny and then it's not.  It doesn't make sense.  

All this is another awkening as to why we need more research, more medicine and a cure.  

No person should be perfectly "healthy" by all standards but spend days in bed, napping and not moving.  

MS needs to be more of a cause.  It needs to be more of a movement.  And that is why I am so open about my experience, just for these reasons.  Also to let other MS sparklers know that "you're not alone!".

Where we go from here...for the next week or so I am to journey my day to day symptoms and such.  Then end of April we will meet and discuss and turn to new plan.

It's been a year.  I'm running out of options.  Which is why the help to promote the orange of MS awareness is SO important.  

Keep fighting on Sparklers!!

PS: On a side note, Mom is doing well and healing. She is finding the use of my old walker quite useful and is getting up and around a few times a day.  Progress!

Love, Eliz