The New World of MS Treatment

Today there are nine available drugs for MS.  NINE!!!

Quick sidenote:  Treatments that are used to treat the entire illness are called Disease Modifying Therapies – DMTs – and that is how I will refer to them here.  Many people also take other medications that treat specific symptoms, like Provigil to treat fatigue.  It’s important to clarify the difference.   


And, we’re back!  O
f the 9 DMTs available for MS today,two of them are taken orally, another is a monthly infusion, and yet another is an infusion just four times a year.  The world of MS treatment today is completely different from the world of MS treatment that I was first introduced to 14 years ago.

When I was diagnosed there were THREE options.  I could choose from my “very exciting” options of a daily, weekly, or tri-weekly injection – every twelve year old’s idea of fun!  Haha!  In all seriousness, this was a very limited selection and just a few months before my diagnosis, only two of those drugs were available.  

 

Imagine what it would be like to have been diagnosed in the 1980’s.  I actually always try to imagine it myself.  See, when I received my diagnosis, my UCLA neurologist sat with me for, what felt like hours but may have only been 15 minutes, and explained MS in detail.  When I try to rewind from 1998 to 1988 I imagine “The Talk” sounding something like this:  Well Kaley, we’re pretty sure you have something called MS.  It’s devastatingly debilitating and the prognosis is pretty bleak.  The good news is…well ummm let’s just focus on the other things in your life like your friends family…  Treatment?  Oh, well there isn’t really anything you can do to treat MS.  There might be a trial you can participate in, I mean, what do you have to lose right?  In any case, no need for a follow up appointment, what happens from here is pretty predictable.


Completely terrifying right?  It’s pretty plausible though.  The first time MRI was even used to identify MS was in 1981 and that’s a pretty foundational puzzle piece for being able to then create drugs and study their effects.  

I always say that I was so blessed to be diagnosed at that time in history.  There were three medications available and that felt like a gold mine in comparison to what was available to those who came before me.  

And now I look at what we have today and I am just in awe.  Someone facing a new diagnosis does not have to automatically resort to needles, which often leads to complete avoidance of any form of treatment.  

While we have new medications in much more friendly forms today, like an oral pill, they don’t necessarily come without complications.  Every treatment has its own risks and hopefully patients still weigh those carefully before automatically jumping for a pill.  But it is still such a welcome relief.  Ironically, I am pretty satisfied with my monthly infusion and have not even considered one of the pills available even though it would certainly alleviate a few pokes and all the stress of infusion day.  It still makes me feel so much better though knowing that the options exist.  

I believe it is all relative.  I went from a daily injection, to a weekly injection, to a monthly infusion.  So in my mind, my infusion is a luxury and brings great relief from the daily struggle I used to face poking myself.  But to someone who is newly diagnosed, I think the idea of an injection would be completely out, and maybe even the idea of an infusion would feel like too much.  From my perspective, I feel so lucky to have so many options, but perhaps to someone new to the MS world, they feel limited with only two oral options.  

I find it interesting that we are so much more advanced today compared to just 14 years ago, but it will always remain relative.  There are people who have had an allergic reaction to every treatment in which case nine options is nothing.  They aren’t benefiting from the advancement in MS treatment in the last few years.  I mean here I am jumping for joy and the next patient might feel disappointed from all the closed doors.  Obviously we still have a ways to go, I just don’t want to lose sight of where we have been.

 

I remember being in support group meetings when I was a teenager and we all compared our experiences with the same two or three medications.  In terms of treatment, we had a shared experience and could share tips or challenges about preparing the drug itself, to actual injection, to after care of the shot sight.  We understood each other and spoke the same language when it came to treatment.  I might sit in a support group meeting today where every single member is on a different medication – what a clear shift!  I think it’s really important for all of us to take a moment and be grateful that we do have options at all.  A generation before us had zero options and, in many cases, received the equivalent of a death sentence.

Stay tuned later this week when I’ll outline all the treatment options available per the request of some readers.  It makes sense to do so with so many new options these days and is important to stay informed about advances in treatment.

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