Let’s talk about drugs! This is the essence of “why now”, so let’s speak frankly. With conditions like MS, there are no cures, so what you have are treatments for which the best result that can be hoped for is to slow the progression… to modify the disease course. As such, they are referred to as Disease Modifying Therapies (DMT), so in the future when I refer to DMT, I mean drugs. Very very expensive drugs. But that is a story for another day.
My personal history with DMTs starts out in probably the worst possible way. Without choice. In essence, as I kind of alluded to previously, I was told “you will be on this drug”. There were no choices, there was no information, there was no education, no decision. It was merely “You will go on this needle drug” to someone afraid of needles in the first place. So not only was it “You have this scary thing happening to you”, it was also “you have to treat it in the absolute worst way possible for you.” It started out as a pure syringe-oriented thing, then shortly after I started it, they put it in an “auto-injector” which sounds great and looks fun, but it’s like giving yourself an epi-pen. Every day. On purpose. It’s loud. It’s intentional, and about half the time, when you hit the button, it would hang up, so you’d have to work up to it twice.
Fast forward to my transfer of care (this might be another story some day) – and my new neurologist and I were *gasp* having a conversation about DMT and where I had been. On top of the mental struggle with the physical injection itself, the drug provided for me some fun firsts:
1. If I forgot to take my Aleve, I would be racked with uncontrollable full-body chills. This was particularly challenging at the start of treatment when I forgot they told me to do this in the first place. So strike 3 already.
2. I didn’t like the drug. It made me feel funny. I didn’t know exactly how… that is to say I didn’t know how to describe the feeling… but it started in my stomach area and ran up and over the back of my shoulders and over… and just felt… weird. I didn’t like it. Strike 4. But looking back at it, I learned how to isolate and communicate physical feelings and reactions. This will be important in my next DMT stop.
I’m speaking with my new neurologist about where to start with a new treatment. I tell her about my feelings about my previous DMT and express my desire to lose the needle. Fun fact! There is a daily oral medication that you can take! This sounds brilliant! Sign me up. So starts my second chapter of treatment.
A once daily oral treatment that suggests eating before you take it (and the every morning medically relevant breakfast sandwich that went with it) really fit the bill and so I launched into a new phase of treatment fully committed and excited to try to be the best me that I could be at that point. Things went swimmingly for an amount of time… 3 months or so? Remember item 2 from above, though? This is where that became relevant.
At about three months in (following a check-up MRI to see if the new drug was doing as it should do), I mentioned something to my neurologist about a weird thing I had been noticing. When I was climbing stairs, sometimes if I was in my head thinking or something, I would add a step, kind of. In essence, I would go to take the next step up, but my foot would go two steps-worth of height up and one step forward… a minor inconvenience, but it seemed to trouble Dr. Qian (read: Chen). Troubled enough that we instantly started a new discussion about what my treatment would look like. To this day, I still have no idea why or what troubled her so much.
The drug I had left was still an option, and there was a daily subcutaneous injection that was an option as well… but I could not at that time describe how much I did not want needles in my life. This makes the next step step an odd , incongruous step. Side note: In considering DMT, there is something called the John Cunningham Virus (JCV). Many people have this and will never know it because it never becomes clinically relevant. Considering DMT, it becomes super-relevant in the thought process because it is essentially an open door to some pretty nasty stuff. I’ll do a separate post on this too, because I want to know more than I do about it. At any rate, my MS clinic is involved in a number of research trials at any particular time. At this time, there was a trial drug that was said to have a chance to heal damage to the myelin sheaths of the nerves. A chance to repair… a chance to heal. The cost? It was a phase I study (each drug ever goes through at least three stages of study) so there wasn’t a lot of human data on it. It would require checking in on the patient’s CSF (cerebrospinal fluid). Twice a year spinal taps. On purpose. But it was a chance to heal. So I went for it.
I flunked out of the trial almost instantly. No chance to heal. No spinal tap (yay!). That story is a post in and of itself as well. Some day, probably. Anyway, we’re back at square one, except that I have resigned myself to being an experimental being. The way I saw it, the specter of the available therapies vs the potential risks was no worse than the unknown in a research study… and if I have been actively part of trying to make things better, I’d have at least done something worthwhile. So I jumped into another study. At the time it did not have a branded name. It now is FDA approved. You probably have seen commercials for it on your streaming service… or targeted ads are super invasive. Or both.
Regardless, I got on this research study. It meant lots and lots of blood draws… lots and lots of MRI (with and without contrast). The end result? I am still on this drug. 6 years later. And I have much less of a fear of needles. So at any rate (1,000 words later and we are coming to “why now?”) I am on a once-every-6-month infusion and a once-a-year-MRI schedule. My new disease activity in that time has been 0. When I say I am in the best possible place that I can be, I mean it. It is no longer progressing. I am not healing, but I am not getting worse. So what does this treatment do?
Current thought in MS research centers around the B-cells of the immune system. Something makes them go haywire and mark the nerve cells of the central nervous system as a threat. Hence the damage to the protective myelin sheaths. In essence, this infusion drops an A-bomb on my B-cells. I am perpetually immune suppressed. I am not immune compromised… the T-cells still do their thing. (think of the B-cells as trackers and the T-cells as killers) BUT as a result in the current world, I have to be careful. I double-mask in public. For my own safety. I have a two-week window in April where my B-cells will be recovered enough but not too close to my next infusion to hopefully get the benefit form a vaccine booster shot. So in the mean time, I have to be careful with me. So I do double-mask. Because I need to. It’s not just “LOL oh, bleeding-heart Jim lololol”. I mean, I am that. And I’m not sorry about that. But I am that… and I have to be careful with me the best way that I can so that I can continue to be that.
My phone is open – if you have questions, feel free to ask. I will be travelling over the next week or so, so I may pause or slow down posts, but after the New Year we’ll be for sure back at it. Anyway, be well. Be safe. Be aware that maybe someone that you are not aware of might need your consideration. Peace.
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