At 64, I’m Surprised to Be Scrambling to Mount a Chariot
As usual, I’ve gone for what I hope to be an intriguing headline, because you’ve got to grab a reader by any means necessary. If you’ve read this far, I’m winning!
This saga goes back well over a year, when my neurologist suggested I participate in a clinical trial for the medication Mavenclad (cladribine) here in the U.K. This is because I’ve now entered the wonderful world of secondary progressive MS (SPMS), and our National Health Service doesn’t yet offer Mavenclad to us SPMS lot.
Indeed, I’m not even sure you can get a prescription for Mavenclad through the private healthcare system here, as I’ve tried checking. In contrast, the U.S. approved it for treatment of adults with relapsing forms of MS in 2019.
My neuropathic right arm is in such a state that there is an entire cocktail (if only it was a real cocktail) of drugs I must swallow to deal with it. Here goes the baclofen, gabapentin, and diazepam! Handily — or in my case, right handily — both baclofen and gabapentin also control my most painful comorbidity, trigeminal neuralgia.
So, now, if I haven’t bored the bot-bot out of you with the necessary info-laden last paragraph, why the reference to 1950s sword-and-sandals films in the headline? It’s because of ChariotMS, a Phase 2 clinical trial examining Mavenclad in patients just like moi. The trial is accepting only 200 participants, and many will be in the control group taking a placebo. Still, that’s better odds than the 0% chance I’d have of getting the drug outside the trial.
I had to launch a small campaign to get in. My neurologist sent at least three referral letters, and I asked my general practitioner to send one as well.
And it finally worked!
I feel like I’m reverting to childhood anyway, so I might as well wield that old stalwart of pester power.
I received a call a few weeks ago saying I’d been accepted into the trial. Even better, trial sites are located across the U.K., and as my luck seems to be holding, one is actually at a hospital located just a few miles away.
It seems that current medical science suggests that placebos don’t necessarily work for some of us with MS, so if I do see a slight medical improvement, perhaps it will be illusory.
Nevertheless, a pill in the hand is better than none at all in the drug carousel that is our MS lives.
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