Star Wars

Today, I got a call from my neurologist.  Turns out, they were able to get my brain MRI results despite my insurance not covering the cost - I suppose I will get a big bill for that later, but I'm glad that they saw them, as it turns out my last round of steroids was, yet again, unsuccessful.

My MRI shows that my lesions are not necessarily getting bigger, but now there are new ones.  This is not a good sign.  Though it is somewhat amusing to consider that my body's inflammation 'laughs in the face of steroids,' muahaha!

I have done a little research on the drug they are going to put me on next.  Let's learn about it together!

1) What is it?

The name of this drug is 'Acthar,' which reminded me an awful lot of Star Wars, hence the comic at the end of this post.  I hope you find it mildly amusing :)

Acthar is called an Adrenocorticotropic hormone, or ACTH.  It is meant specifically for acute exacerbations of MS (though I don't know if I could call this an acute exacerbation if I've had this for three months and it just isn't getting better.  I don't feel good about that, but let's move on!)

2) What makes Acthar different from the steroid injection treatment?

Acthar is not a steriod, but it acts something like one.  It forces the body's adrenal gland to go on hyperdrive and produce a hormone called 'Cortisol.'  You might recognize that as a word you hear in diet pill commercials as the 'stress hormone,' which increases body fat in certain places and in general just causes all sorts of problems.  Well, Acthar wants to use those crappy side effects of Cortisol to treat your MS!  It basically tells your immune system and inflammatory response to STFU.  It is essentially a natural steroid.  It can increase body fat, increase fluid retention, decrease your body's ability to process glucose, increase your likelihood of stomach ulcer - lots of problems.

Acthar is also not an intravenous drug, meaning it is actually given in the muscle, like you would a flu shot.  It shouldn't be taken intravenously because it can spread through your system at too fast a rate; this is why heroine addicts prefer a direct vein to shooting themselves in the leg.  You have to give this drug to yourself in a syringe for a number of days when you receive it.  I will not be doing that, I will be checking into my neurology office every day for 5 days until this is over.  I have put on a brave face this whole time, but I really do not like needles, and I don't know if Steve has the strength to do this for me right now.  I haven't told him yet.

It will be a fun ride for sure.

3) Why do you need this drug?

You need this drug if you have 'failed' steroids, which means you are still having an exacerbation and inflammation after being treated.  I have failed steroids twice now, and have new lesions, which means somebody, somewhere, needs to tell my inflammatory system to STFU.  That is where Acthar comes in.

My insurance company should cover this now that it is a justified use of the drug, you have to fail it twice for the company to give it to you as these little vials cost about $50,000 (that is straight out of the horse's mouth, the neurologist, when telling me about this a few weeks ago as the next option). 

4) Okay, so it should halt the progression.  What are the downsides?

It can cause wicked bad mood swings.  There's a huge paragraph warning about this; I already suffer from mood swings with my depression, so I'm sure I'll be way pleasant in the next couple of weeks.  General body swelling is another side effect.  This is the sort of drug that you absolutely cannot accidentally become pregnant while on, too.

I'm going to go grab my laundry now, as my life cannot stop though my brain clearly wants me to take a break!  I hope this helps someone out there get a better idea of what is up ahead.  I will continue to update as a know more.  Thanks for listening.

Let's hope Admiral Ackbar isn't right this time...