Pick Your Poison

Right now, a week + 1 day since my official diagnosis from the neurologist, I am staying up reading about treatment options.

What are they?  Well, it helps me to write things down, so let's go through them!  ::plays corny music::

Let's begin by discussing what treatments really are.  There is no cure for MS, and there are no ways to guarantee that any treatment will work for my 'flavor.'  Everyone is different, some people have 'flare ups' (a series of worsening symptoms for more than 24 hours indicating new lesions or damage) when they get their period, some get them randomly for no reason at all, some people have a single bad flare up and then never have one again.  As much as I would like to think I'm in that last category, the mere presence of several different lesions on my MRI suggests otherwise.  That's why the blog is titled as it is: when a radiologist sees a lesion on an MRI, they often describe it as 'a focus of restricted diffusion.'  What that means exactly, I do not know, I'm not a neurologist, stop asking so many questions!  :)

But these treatments are meant to 'slow down the flare-up relapses,' reducing their likelihood by essentially telling your immune system and T-cells to STFU.  It can make you more susceptible to other infections, diseases, etc.  Some cause stomach issues.  Some are pills, some are injections or infusions.  Some cause major birth defects.   All of these ones are meant to treat the type 'relapsing/remitting,' which is the most common form. 

It's a game of 'which is worse, the medication, or your MS?'

1) Tecfidera
This first option comes with a 'schwag bag' of sorts, and has the information packet neatly enclosed in a green mesh zippered bag.  Clearly a ploy to make the product more interesting, but let's take a look.

This treatment is a pill version, taken twice a day.  Causes common side effects of 'flushing' and 'stomach problems,' starting at the beginning and getting better - since I already have GERD and chronic stomach pain, I'm gonna say this one isn't looking so good.

Hmm, people taking this in a 2 year trial had 1/2 the relapses than those on placebo.  I feel for the placebo patients.  It apparently also delays 'physical disability progression.'  Well FAN-TAS-TIC.  I LOVE reading about how my body could slowly deteriorate with this disease.  Did I mention that I'm 25 and an active artist who now has numbness and tingling in my hands?  Yeah, this is not terrifying AT ALL.

Slows development of brain lesions.  Damn, I thought I could get that merit badge for '100 myelin sheaths destroyed' this month.  Guess I'll have to wait for that next year, Tecfidera!

All joking aside, this is a helpful little booklet, and it teaches the different names of lesions on an MRI (for example, my foci are described as FLAIR/T2 lesions, which are apparently long-term impacts of inflammation, which is essentially all that MS is in the brain).  This drug does, however, have warnings on every page about possible white blood cell count loss (meaning you are more likely to be at risk for other bad things like infection - and I work in a doctor's office) and the risk to potential pregnancies.  Since I am at the age of conception, and I have existing stomach issues, I think this one is pretty low on the list.

2) Tysabri
Oo, another totally unpronounceable drug.  NIIIICE.  OOO again, a sleeve with lots of little brochures tucked inside.  This doesn't look tedious to read at all.  I am already excited.

Tysabri is immediately different because it is a monthly infusion.  What this means is I would have to take time once a month to go to an infusion center or hospital to receive this drug intravenously for at least an hour.  Some of these things make worse symptoms while the infusion happens; for example, the infusions they gave me after the ER visit made everything taste like metal for an hour and a half but for a week I couldn't taste salty things, and soda wasn't fizzy (which is a big deal when you drink soda all the time like I do).  But it's good because until Tecfidera, this is not a steroid, but an antibody - it basically tells white blood cells to STFU without killing them off.
 
Tysabri can put you at risk for a particular brain infection, it's a virus they can test you for, but the risk is there nonetheless.  Apparently some places put all their patients on this drug even when some test positive for the virus - sounds risky to me, but whatever floats your boat.  Has a better rate of less relapses compared to the other drug so far.

This one has the same thing about reducing the timeline for physical disability.  Love reading about that every time.  But this one has a new risk for liver failure - I don't drink, so knock wood my liver is as healthy as it can be, but we'll see.  Common side effects include headaches, UTIs, lung infections, pain in arms and legs, vaginitis, stomach pain, fatigue, joint pain, depression... I already suffer from many of these things pretty regularly.  I am not afraid of needles, but I don't look good with the 'I look like I could have heroine tracks' look, either.  I say - PASS!

3) Gilenya
This one is new, and I remember seeing it advertised a lot when Jack Osborne was on DWTS.  I admit, I thought about MS a lot when that came out, because I have suspected this problem for some time.

Now, let's examing Gilenya.  It is a once/day pill that has to be taken diligently; if I were to start, then miss it for 14 days, I would have to go back to the hospital to be monitored when I took it again because it can cause heart problems.  WHOA.  Sounds like a much bigger problem than my legs being numb, doesn't it?  But really, what idiot takes a pill then forgets to 2 straight weeks?  You don't 'forget' that crap.  Really, you do that on purpose or something.  But I take The Pill, so I am used to a daily dose.

Yeah... all the side effects about this one are all about the heart.  No history of heart attack, unstable angina (giggle if you wanna), stroke or warning stroke, heart failure... oy.  Bigger problem?
I would need to hang out in a hospital hooked up to monitors the first time/two I took this drug if I chose it to make sure my heart wouldn't stop.  FAN-TAS-TIC.

This one includes information about how an insurance company might cover it.  Since I am broke, and finishing graduate school as we speak, this is very important and puts it on the table.
Lowers the number of white blood cells ... they all do that, I've seen.  Macular edema can also be a side effect - it's essentially the same thing that MS does when it inflames the optic nerve (optic neuritis) but might be progressive.  Should check eyes before taking this drug (which I need to do anyway).  Also may 'harm your unborn baby.'  Ironic, since many ppl have told me that pregnancy will put MS at bay, often causing mothers to crash after giving birth.  So we'll see how that goes.

Did I mention no one knows how these drugs work, they just kinda... do?
All the options suck!  I'm going to bed.  I'll decide tomorrow.

Love, Margo