It Does What, Now..?

Just over a year ago I posted about how excited I was to be trying a new dry cleaning fluid based pill, hoping it’d be a panacea, etc., etc. Well now, 13 months later I can report ~ yeah, not so much.

An $18,995 MRI came back all clean and rosy ~ no new lesions and others even reduced in size ~ this is all good. What’s not good however, is my new inability to do things, like, oh….. WALK. That particular skill has gone directly and solidly downhill.

Consequently, I scheduled a pow-wow with my doctor….wait, I haven’t told you about my new doctor yet, have I? Oh my goodness! Dr B. She is amazing! Very, very, very smart. She looks like Emma Peel as a Russian spy. She’s very stylish and gorgeous and super well dressed. Under her white doctor coat she wears super chic black A-line dresses or slacks and pointy shoes. She has teased hair, black eyeliner, gold jewelry and a PhD. In a nut shell, she is bad ass.

Dr B. and I discussed my options and together (with patient advocate daughter Liza by my side (it was her turn, Anna went last time)), we opted for another newish drug called Gilenya.

This will be drug therapy #3. Two main things seem to be consistent with MS drugs. 1) they are massively expensive and, 2) scientists seem to have now idea how they work. Witness the fancy brochure I had sent overnight to me from Novartis, (the makers of Gilenya). Tucked in amongst the glossy pictures of people laughing and splashing paint all over the place (why? I have no idea), and warnings of side effects you don’t want to know about, is this gem of a phrase on page 10: “While it’s not exactly clear how Gilenya works….”

Whoa, wait a second. WTF? I’m going to take some pill that is unknown as to how it works? The short answer is hell yeah. If it can slow this thing down, then you betcha. Honestly I don’t care how it works, only that it does.

So I get an EKG to see if my heart is ok. I get blood drawn to see if my liver is ok. I see a nuero ophthalmologist (this guy is also gorgeous ~ if you get MS, go to USC Keck Medical Center) to assess if my eyes are ok (I told you you didn’t want to know about the side effects…).  I contact my insurance. I contact my co-pay assistance fund. I get green lighted all the way around and now I am good to go.

The next step is to go to an out patient center someplace in the Valley so that I can take my first pill and then be monitored for six hours to make sure my heart doesn’t stop beating or some damn thing. Chances are one in a zillion, but I guess they want to be sure.

I trust my new Avenger doctor and her recommendations. But let us please, collectively keep our fingers crossed that this works.The next options are even crazier ~ but you can bet I’ll try them if this one doesn’t pan out!emmapeel

 

9 thoughts on “It Does What, Now..?

  1. Erika,

    My thoughts and prayers are with you. I am speechless, but if I can ever help in anyway, just ask.

    Grover

  2. Ok Erika, so I’m finally interacting with you even though you have been on my mind for years and you and Lynn have been pals forever. Forgive me for not reaching out, but you know I’ve had my own denial crap going on and now I’m dealing with it. As you know our son Clay, age 43 now, and diagnosed two years ago; started on gilenya as his first treatment plan. So far no side effects that he has noticed. Has it slowed his progression? Who knows, because it’s his first treatment and there is no time line established. We’ll be in touch, and good luck with the treatment. We can chat, so give me a call.

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