Wow, I can’t believe it’s been so long since my last post. Life has been happening… in that sort of busy everything-comes-at-once sort of way.
Right now, and for the last week or so, I’ve been dealing with an exacerbation (or “relapse”) of multiple sclerosis. My back on the left side has been shifting between numb, tingly, and burning – and for the first part of the relapse, the same was true of the left side of my chest. (Nothing is as strange feeling to me as a completely numb boob that I can feel with my hand but not feel on my chest.) Add to the mix a few seizures (which were totally unexpected since I’ve been mostly seizure free this year) and some crushing fatigue and you’ve got a recipe for “Me on a Medrol dose pack.”
One thing that is different about having a relapse here in Chicago from when I had them in Los Angeles, is that my current MS neurologist (Dr. J) has never ordered Solumedrol-IV drips. (I’m using the term “MS Neurologist” to differentiate him from the neurologist that I see for my seizures, who works at the same hospital.) In LA, I was getting Solumedrol drips fairly regularly – probably once every 6 months or so. In fact, this is only the second relapse that I’ve had since moving to the Windy City 2 years ago, and both times, they were handled with oral meds. This is not a complaint. I’m not a huge fan of the 3-5 days of drips, but they do get the job done thoroughly.
Dance of the Meds
When I spoke with Dr. J on Friday, he let me in on some news about the progression of my MS that I really didn’t like. He was comparing the MRIs from beginning of March last year to ones taken at the end of July of last year… only a 5 month window for change… but he said that there were significant changes. Apparently, many of my lesions were/are growing in size and number, suggesting that the Copaxone that I inject nightly either isn’t doing its job to slow progression, or isn’t doing it well enough for him to want me to stay on it. He suggested that we talk about my getting on Tecfidera (BG-12) at our next appointment (which is June 3.).
So why is that problematic? Because you can’t get pregnant on Tecfidera. Copaxone is the only disease modifying drug for MS that is tested safe for becoming pregnant… and I have been working to get off all drugs that would negatively affect a pregnancy for over a year now. I am, for the first time in 6 years, not on anything that could badly affect a baby. No Cymbalta, no Abilify, no Topamax. The only drug that I take now that could have any affect on the pregnancy is Nortriptyline (which I take both to deal with MS pain and depression), and it’s been considered one of the safer antidepressants to use during pregnancy for years. I am, however, considering dropping it too if we make the choice to go ahead and start our family.
It’s All About Timing
I am strongly considering getting on Tecfidera right now anyway, and just stopping taking it when we’re ready to conceive. Adam and I have so many mutual goals right now that are at odds with having a baby right now: (1) achieving optimal body weight, (We’ve been hitting the gym 4-5 times a week for months now.) (2) buying a house, and (3) finally going on a vacation somewhere together.
I know that it would be better for the pregnancy if I were not overweight. Right now, I’m 70 pounds heavier than I want to be, but I’m on course to be my optimal weight in about a year. A year is also about how much time we need to save up the downpayment for a house. Right now, we live in a 2 bedroom apartment. Could we make room for a baby? Sure… but it’s not ideal. And then there’s the very real fact that kids are like money vacuums. The likelihood of Adam and I ever getting to go to a resort together when we have an infant is ridiculously low.
So, it seems, from my perspective at least, like the smart move would be to switch to Tecfidera for at least a year, and put off becoming a mother until our situation is more ideal. At least I’m not baby-crazy like I was this time last year.
I’m also hoping that The Assistance Fund will work with me to pay for Tecfidera if I switch from Copaxone. Both drugs cost more than $50,000 a year, so the change shouldn’t affect how much they’re paying, if they’re willing to continue to help me out.
As for how I am today: I can feel my chest, my back is sort of “buzzing” or fuzzy feeling, and I’m not crazy fatigued. I haven’t had a seizure in the last 3 days. This is good for not being done with the dose pack yet. I’m on my second to last day.
If I’m lucky, I’ll get most of the laundry and dishes done today before therapy. Hope you’re all doing well.
2 thoughts on “Rae vs. the Relapse: Round 1! FIGHT!”
You make great practical sense, Rachael. I am so proud of you.
Thanks, Mom! I really appreciate you letting me know that I actually am making good senes. 🙂 Sometimes, I question if I’m being realistic with my desires and expectations for life. I’m just trying, right now, to balance everything. I just know that the last thing I want is to go ahead and get pregnant and then have the whole, “I never got to do XYZ because I became a mom too early” thing. I feel like, in some ways, I’m playing FreeCell with my life.