My last personal update consisted of a failed antidepressant – Auvelity – and a very uncertain, bleak outlook. Again, not a whole lot has changed, and yet everything’s different.
We stopped Auvelity, as mentioned, in late November. My appointments with my psychiatrist are usually three weeks to a month apart, depending on what med changes we make and how open his schedule is. My December appointment largely consisted of discussing a brand-new antipsychotic called Cobenfy. It’s only been on the market for about two and a half months by now, I’d guess – at the time we discussed it initially, it had only been a month and a half.
Cobenfy works differently than any previous antipsychotic. I don’t know all the details, but older antipsychotics work by targeting dopamine receptors – this is a large part of how most antipsychotics work, and have worked, for as long as they’ve been developed. Instead of targeting dopamine receptors, Cobenfy targets proteins in the brain called muscarinic receptors. This may indirectly affect dopamine, but… well, it works differently somehow, with its own set of side effects and long-term complications, many of which are not known yet since it’s so new.
It is FDA-approved to treat schizophrenia, but not bipolar – yet. This FDA approval may come at a later time, after more people have taken the drug and more effects are posited by data and experience. Almost all antipsychotics double as mood stabilizers, which is what I need more of in my treatment. In short, I am a guinea pig, trying a drug for a currently off-label use, as this class of drug is typically useful for my needs as well.
I assume my psychiatrist’s intention is to see if Cobenfy stabilizes my mood at all. If it does, then he will probably want to lower, or possibly eliminate entirely, my lithium due to my chronic kidney disease. At that point, he may also lower or eliminate lurasidone (Latuda – an antipsychotic) from my med cocktail. Lurasidone has been the most effective antipsychotic for me for my psychosis – barring clozapine, which had side effects too hard to deal with or treat for me – but doesn’t seem to help with my mood as much as we want. It also is more likely to cause a condition called tardive dyskinesia (involuntary movements, typically of or around the mouth) the higher dose you’re on and/or the longer you’re on it. I’m looking at a lifetime of antipsychotics, since my diagnosis is lifelong, and am currently at the max dose of lurasidone. Odds are I will experience TD at some point or another. Clozapine typically causes less TD than other antipsychotics, so that would have been a positive if I could have stayed on that drug.
Anyway, it took a couple weeks to get Cobenfy pushed through insurance so I could start it. I started by taking one 50mg+20mg capsule in the mornings for a week. The 50mg+20mg dosage is because, much like Auvelity with its dextromethorphan (cough syrup) and bupropion, there are two major drugs in the Cobenfy capsule: xanomeline and trospium chloride. The 50mg relates to xanomeline and the 20mg relates to trospium chloride. Xanomeline is the drug used to actually treat schizophrenia while trospium chloride is used to treat negative side effects from xanomeline. I took 50mg+20mg Cobenfy once a day for a week and then we increased it to 100mg+20mg.
We had just switched duloxetine (Cymbalta) in my med cocktail back to a PRN (as needed) medication. Now, I was starting the 100mg+20mg Cobenfy capsules somewhere around the New Year. I crashed emotionally around that time and had about a week of bad, low days before I decided to try taking my PRN duloxetine to see if I could turn it around. On one of the days I took duloxetine, I suddenly realized that my vision was blurry. I couldn’t read the names of the states on my map on the wall – not that I didn’t know which state was which anymore, it’s just that I could no longer read the names because they were so blurry. Then came the nausea, which would quickly worsen if I moved. I also found myself getting very confused and dizzy. I ended up napping it off, but it wasn’t a fun experience.
This happened again, so since my mood had improved since taking my duloxetine and I hadn’t been taking Cobenfy for too long, I stopped Cobenfy for that weekend and called my psychiatrist on the next Monday. He told me to restart Cobenfy and to stop taking duloxetine, as it was probably a drug interaction, and I agreed that we wanted to give Cobenfy a fighting chance, since he thought it was the right call.
Flash forward to now. Today is my second day on the 100mg+20mg once a day Cobenfy dose. Yesterday I experienced those side effects again despite not taking duloxetine. Apparently these side effects can be from either too much of or not enough of the secondary drug in Cobenfy (trospium chloride). My psychiatrist and I agreed that I’ll keep trying it for a few days to see if I can begin tolerating it, as a lot of the time when you experience side effects that are not an allergic reaction at the start of a drug, these side effects will resolve themselves within time. If I can tolerate this dose once a day for a few more days without those side effects again, then we’ll try moving me to 100mg+20mg twice a day – one in the morning, one at night.
I don’t have high hopes, but I’m learning more and more about different drugs, which can only work in my favor, I figure. Especially if I ever end up seeing a different psychiatrist – which I do not currently want – but if I ever move out of state or my psychiatrist retires or something.
As for life… I’m trying to stream more. I finally wrote a poem today after weeks of not writing anything. I’m trying to lose weight. I’m trying to be brave and daring and strong. Things with my boyfriend are good, though my BPD has been acting up off and on again lately. He’s good at reassuring me and is kind in how he handles me. Mostly, right now, is these changes in medications though, and waiting to hear from the SSA when my next hearing is for SSI.
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