New Med, Who Dis?

New Med, Who Dis?

I’ve been really busy with work and I forgot to write about med changes! They happened in September.

This year, I saw not only my awesome neurologist but also a physiatrist. He’s also cool, a bit sardonic but that’s my jam so the appointment was great.

He’s the doc who specializes in spasticity, weakness, and pain. But first…the neurologist.

At some point during our appointment, he suggested I look into a med called Fampyra. (He suggests but he’s never pushy or authoritarian.) He explained that it’s a potassium-channel blocker specifically for MS to help patients walk better.

It’s for MS patients with spinal lesions, of which I have 18. 13 of them are on my cervical spine, which is really bad. Like, numerous cervical spine lesions will really stress your neurologist out and it isn’t awesome for you, either. The spinal cord isn’t as neuroplastic as the brain because it’s a very small space, so less options for rewiring. Plus, if the communication super highway is damaged at a high level (like in your neck) it’s really hard to get messages to your body.

As a potassium channel blocker, Fampyra prolongs action potential. If you don’t remember high school science, it basically gives me more time to get messages to my body and gets them there faster.

But only about a third of patients respond to it, and some benefits don’t cover it so he told me to check with Blue Cross first because

Then I did a 25 foot walk test and a couple more tests and then I met the physiatrist. More tests, physical assessment, some very dry humour and then he tells me that he thinks weakness is my problem, not spasticity.

(See previous gif)

So he recommended water jogging, (fiiiiiiiine ugh) strengthening my hip flexors and decreased my baclofen dose from 4 pills a day to 2.

I had to go to my pharmacy on the way home, so I asked the pharmacist if my benefits would cover the med. I have group Blue Cross and non group, and she said one would cover it if I was a responder if my neurologist requested a special authorization, but the other wouldn’t. That’s when I found out how much it costs. (Neurologist said it was about 500 a month.) But one would cover it (70% of it) so I emailed the neurologist when I got home and said I wanted to give it a try.

I wasn’t warned there might be withdrawal symptoms so I wasn’t expecting any, which is why I went out of town to work for a week in the boonies the next day and decreased the dose as recommended. Day 2 or 3, I had several dizzy spells, one pre-syncopal episode where I was caught by a colleague before I fainted onto the ground, and threw up once on a rough road. I don’t get motion sick, but I was a mess. My emotions were a mess, and I had one three hour sobbing meltdown for no reason. Sleeping wasn’t great for a few nights but thankfully the misery only lasted a few days.

As soon as I felt I wasn’t going to die, I got a phone call from the drug company that supplies Fampyra. The first month would be on them because it would take nearly a month to know if I was a responder or not. It comes from a special pharmacy in Edmonton, would be delivered by courier, and needed a signature.

Those pills showed up the next day.

They had to be taken 12 hours apart on an empty stomach so either an hour before a meal or two hours after. There was only about 15 minutes leeway with the dosing time, so if I was going to be late taking one I needed to skip it. Taking the pills too close together could cause a seizure, stopping baclofen abruptly can cause a seizure…

I’m not really a seize the day type so I’m really diligent about this med.

In 10 days, I wondered if ‘super responder’ was a thing!

I felt almost back to normal, pre-MS. Since 2020, I’ve only been able to balance on my left leg for a few seconds. 3 days after starting the new med, I stood on it for 22.63 seconds.

And walking! In a week, I started walking at a normal speed without realizing. My foot drop was better but my knee hyperextension got really bad which might be related to the decreased baclofen combined with increased walking speed. (Went to physio for that, but that’s another post for another day.)

I haven’t been cane dependent since the third week of September. I always have one just in case and I’m not walking great distances yet, but going into the grocery store or the pharmacy without needing a cane has brought me joy. I’ve walked unassisted to the grocery store to grab a few things and then walked back, only needing to bust out the collapsible cane about 3/4 of a block away from home. The distance to the store is 1/3 mile. I’ve taken video of walking unassisted and posted them on social media to make sure I’m not delusional.

The Alinker started improving my posture and gait back in May. It allowed me to become more active, it made me want to be more active. The Fampyra just cranked all that up to 11. I go up and down the stairs several times a day now, and there’s even been a few times I’ve carefully carried things in both hands and gone up the stairs without needing a hand on the wall or railing. (Going down is way dicier so I don’t tempt fate.)

I danced a samba a few weeks ago, if you’re unfamiliar it’s a pretty fast Latin dance. That brought me more joy. A few times a week, I discover something I can do again, or something I can do much better.

I want to cry, this med has made life so much better. I’m going to be able to work more this summer, I’m independent again (mostly, I still have bad days when I can’t leave the house or I’m so disabled I need to stay on the couch for safety) and everything is just easier and less exhausting.

So of course Blue Cross denied coverage hahahahahahahahaha!

My neurologist has appealed it, so we’ll wait who knows how long for that decision.

If I have to pay for this med out of pocket…

I mean, I’m not saying I’d turn to a life of crime to pay for this life-changing med.

But I’m not saying I wouldn’t. 😉

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