the FDA

Today, the hubs and I journeyed into Philadelphia for my quarterly appointment with Dr. M. Since I’ve passed the two-year mark of being on Tysabri, they have to monitor my levels more closely, because I have the JC Virus. (Little bit of info: the drug Tysabri elevates your chance of getting PML -which can be a fatal brain infection- if you have levels of the JC virus.  Some people have JC, some don’t.  They aren’t really sure how people get it/don’t get it, but it doesn’t have any affect on you … unless of course, you have MS and want to take Tysabri, which was the strongest drug for MS on the market until Tuesday.  Anyway, in addition to checking the virus levels, organ function has to be tested and monitored, etc etc etc).

Essentially, it just means I get to have more scans and more bloodwork on a more regular basis.  Who could refuse that offer?!?

Last Tuesday, the FDA approved Ocrevus (I have to use the marketing name, because the actual drug name is very long and I can’t spell it properly).  Ocrevus is the first M.S. drug that has shown positive effects in progressive M.S. patients so for them, I am over the moon that it was approved. I have relapsing/remitting MS but mine was pretty aggressive when I was initially diagnosed.  Dr. M had suggested switching me over to it last year upon its approval by the FDA so John and I were interested in what he had to say today.

First, Dr. M was intimately involved in the clinical trials, so he’s pretty close to the effects of the drug as well as getting it approved.  Second, I am fairly certain that I drive Dr. M nuts.  In a good way.

The bottom line was, after talking for a while, Dr. M, John and I decided that for now, I am going to stay on Tysabri.  Listen folks, some of the possible side effects of Tysabri are pretty scary.  Dr. M prescribed it for me three times before I actually scheduled my first infusion.  He had to sit with me in an exam room for hours to convince me to try it.  And at the time, I could barely walk a city block without a cane.  My flares were coming regularly every four to six weeks.  In retrospect, I’m not totally sure why I hesitated.  But I can only really say that in retrospect.  Knowing now that I haven’t had the scary side affects.

I’ve said it once …  I’ve said it a million times.  M.S. is a tough effing disease.  It’s creepy and sneaky and a real bitch.  I hope that as data comes in about Ocrevus that it’s all good.  But I’m super glad that I’m staying on Tysabri for now.  It’s been my savior.  And yes, it’s scary.  But sometimes you have to walk through the fire to get to the good stuff on the other side.  That’s how I think about it.  That’s how I have to think about it.  If I fell into the what-ifs too much, I would drown myself.  Instead, I try to know as little about it as possible.  Here’s what I know ~ in the two years I’ve been on it, I have had a quality of life I thought was an impossibility.  I don’t have to travel with an assortment of needles anymore.  My disease is officially classified as ‘in remission.’  And I am so, so grateful.

2 thoughts on “the FDA

  1. Darling Gwyenth,
    I’ve just taken a few minutes to read your blog (something I ALWAYS enjoy, but haven’t developed any kind of routine with) but I NEVER read it without thinking about how brave, and clever, and funny, and strong you are, and how much I love you, and how proud I am of you.
    In a few weeks, when I have the time and new days to work through and organize, I am going to develop a discipline of reading your blog and sharing these important things with you. I look forward to it.
    Thank you for being the wonderful girl you are.
    All my love,
    Aunty Lenny

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