My Ocrevus Odyssey

I am frequently asked about my current MS medication regiment, so this is a good time to catch up my readers. On September 20, 2017, I wrote about my first dose of Ocrevus:

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My MS has changed over the years – originally diagnosed as “relapsing-remitting,” Dr. Stevens now classifies it as “relapsing-progressive.” Progressive forms of MS have fewer treatments available, but this spring, a new one entered the field: Ocrevus – ocrelizumab. News stories showed promising results, and though our goal is for this medication to help prevent further progression, I can’t help hoping for a smidgen of improvement. Yesterday, I had my first half dose, and the second half will come in two weeks. Then, I will receive this infusion once every six months.

What will it do? I don’t know. I can tell you that my only reaction was a bit of an itchiness and redness that was zapped with Benadryl. So it is that September 20, 2017, marked the first page in this chapter of my medical saga – time will tell what the other pages hold.
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The immediate part that came next had absolutely nothing to do with the new medication, though I first thought it did. That itchiness and redness, then hives that followed? My thick, dark, curly hair (with natural silver streaks) had been hiding something I had never experienced: head lice. We traced back the source, and it has since been dealt with (not in our house, church, or school), and my dear husband assisted me in winning the fight against the nasty buggers. Once my locks were louse-free, I had them chopped two inches shorter, helping me avoid tangles and other issues. So…the second half of my first Ocrevus dose came about four weeks after the first, and those four weeks were no picnic.

Because of the unrelated craziness, it was difficult to tell if the medication was making a difference in my health. With this medication formulated for one infusion every six months, I do appreciate that I don’t have to go in as often or treatments. Is it effective? I can tell you that that the debilitating tongue and jaw problems (hypoglossal and mandibular neuralgia) that hit me two years ago have not returned. This is indeed HUGE.

Three months have now passed since my third Ocrevus treatment. I do take other daily medications in relation to symptoms, but I feel like I’m at as level of a spot as I’ve been for a while. I must admit that when I first started this medication, I had truly hoped to see a few glimmers of improvement. What I think I have found is a more solid line that may be slowing down progression. MRI scans have shown no additional scars in my brain, and we did find scarring in my spinal column… it was encouraging, in some ways, to find that there was a clear reason for some difficulty walking. Did those scars come before or after Ocrevus? I do not know, but I do feel that, paging through the current therapies that fight this MonSter, Ocrevus is the one that serves me best.

Several years ago, I was an example patient for a medical school course Dr. Stevens was teaching. After I shared my symptoms and they guessed my diagnosis, he shared that my disease was trying to progress. He said he’d give this an 8 on a scale of 1-10, with how fast it was trying to move. And this would explain why he had tried so many options. In November, my husband and I had a consultation with the director of the IU MS Center in Indianapolis, and I was encouraged that he agrees completely with Dr. Stevens. The trail thus far has been appropriate, and of two medications that could help me, Ocrevus is the best choice for me.

So for those who ask how this is going for me, the answer continues to be a process. It has involved a fine-tooth comb, patience, education, faith, and partnership. As I continue travelling this odyssey, I will certainly share snippets of life. The next blog post proves to be a fun one, “Knight Rider.” Is it an 80’s series about a talking car? Likely not, but stay tuned…

A new start -Angie’s blog returns!

Happy 2019, friends! It’s been entirely too long since I have posted to this blog. Am I still battling “invisible issues,” you ask? Hmmm… will there be snow in January?

Yes, life with disability leads to paths I never would have foreseen. MS may not be a walk (or stroll) in the park, but blessings still come our way. Though I’m not one for “New Year’s Resolutions,” I do wish to give my blog a jumpstart of sorts. I intend to post at least twice a month, sometimes more. Topics ahead include our “Knight Rider,” driving decisions, my Ocrevus experience, caregiver challenges, chair that offers a lift… and definitely National MS Awareness month and National Poetry Month

So why “Queen Anneangela knight blog header’s Lace” on my cover page? For one thing, it’s one of my favorite wildflowers. I also love how it pokes up where it wasn’t planted, sometimes considered a weed. I’m convinced that people would pay good money to grow this bloom if it weren’t so common. I find blessings in this flower that was not purposely sown. In a similar way, I wish to bring attention to blessings that may be found despite very real struggles.

So let the blog begin!