I don't know why, but after I saw the new specialist in July, it took their office two weeks to get the new prescription to my pharmacy, and there was some back and forth about the prescription. So I didn't actually start the new med until July 23.
This new one is called Cenobamate (X-Copri). When I read about it online, it's a bit crazy. They all are, but this one seems to be really polar. Either it's really awesome, or you're going to the hospital. I could find almost no reports in between. No middle ground. So I was a bit nervous about trying it, especially since I've had bad physical reactions to a couple of the other ones we've tried.
The first night, I was staring at the meds in my hand and just thought, "I don't want to do this." I was feeling the weight of how many pills I take and how many I've tried that haven't worked, and all the side effects I've had to endure... adding a new one to the mix was pretty overwhelming. Took a breath and swallowed the batch.
Because of the potential for severe reactions to Cenobamate, we titrate it VERY slowly. Tiny dose to start, increase every two weeks for several months until I get to a therapeutic dose. So even though it's been three weeks now, I'm still only on 25mg per day. The good news is that I haven't noticed any adverse reactions (yet).
The other good news is that while we are increasing it, I get to start decreasing one of the other ones. We had some disagreement about which one to decrease first; my new specialist is very good about listening to what I want and which meds I want to ditch first (Topiramate and Brivlera). But apparently the Clobazam doesn't mix well with Cenobamate, so as we are increasing the Cenobamate, the Clobazam could start to be an issue. He wanted to get rid of that one first, but gave way and let me do the Brivlera first. Right away--within days--I started feeling better energy. Mostly physically but also mentally, I feel so much better with less Brivlera. This is the one that makes me feel extremely sedated, so reducing it has allowed me to start getting some of my energy back.
If all goes well (no adverse reactions) then in a few more weeks I will be finished with the Brivlera and will also be at therapeutic dose of Cenobamate, and we can look at reducing the next med.
In the meantime:
- I got the call to schedule my PET scan(!). It's for August 30, so it will be done by the time I have my next appointment with the specialist and we can go over the results at the same time that we talk about my next steps with my meds.
- I thank my lucky stars every day for BC's Fair Pharmacare program and for my group benefits. These meds are DAMNED EXPENSIVE. Because Cenobamate/X-Copri is new in Canada, there is no generic version yet and the costs are insane; then add that to the costs of all my other meds and there is no way I would ever be able to afford to even have them were it not for the Pharmcare program. There is a woman in my online support group who is from the US and said she wants to try this med but she can't because she just can't afford it. Imagine being in that position, where you've tried multiple meds and the new, promising one that could be the answer isn't an option because of the cost... I hope for her sake that the generics start to come out on the markets soon.
That's all for today.... will update again after PET scan and next med change. :)
