Thursday, June 26, 2014

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 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 ('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