I don’t know if people are still wanting to hear about Cobenfy, but I thought I’d share my experience with it. And that’s all it is — MY experience. We all know these drugs hit us differently, which is just one more frustration about them…
For those if you who don’t know me, I have Schizoaffective Disorder, bipolar type, ADHD (the Dr-diagnosed kind, not the trendy self diagnosed kind), and a scorching case of OCD, for which my pdoc finally put me on Memantine (technically a dementia med, used off label for OCD).
I had been on Geodon (the only atypical I’m willing to take), 80mg 2x/day - max dose - and with my cocktail of other meds - Lamictal, Wellbutrin, adderall - I was feeling GREAT. Functioning on the highest level I ever had been. Then, this past summer I had a bad break through manic episode, and the subsequent soul-crushing crash that comes after. I don’t remember how much time later, but I had a bad psychotic breakthrough. We tried switching me to Latuda, I put on 3 1/2 pounds in 2 days, and decided I’d rather be crazy than gain back all the weight I’ve lost.
I asked my pdoc about Cobenfy. We started with samples, then he got my insurance to cover it as an authorized exception, because they don’t generally cover it. I have no idea what he said to them… but it worked. (My psoc is AMAZING, btw.) Went in the 50, titrated up to the 100.
Here’s my experience:
The stomach issues, for me, are SEVERE. I was nauseated for awhile, and would regurgitate food even if I ate it a few hours later (you’re supposed to take Cobenfy on a totally empty stomach), but that has gone away.
What hasn’t gone away is this extreme heartburn I get right after I take. It’s borderline unbearable. Like someone jammed me in the chest with a red hot poker. I use antacid and chew gum, but it barely helps. I just need to ride it out. It doesn’t last long, starts to dissipate after less than an hour, fully gone after a couple of hours. But this is EVERY DAY to the point where I fear and dread taking this med.
As far as other symptoms, I have the tachycardia. I had to be medicated for that, because my resting heart rate was reaching scary numbers. My blood pressure is normal. I’ve never had a problem with high blood pressure, and Cobenfy hasn’t changed that. Take my tachycardia with a grain of salt - I have always had normal blood pressure with a high pulse rate. Going back even as far as my 20s (I’m in my 50s now), it’s just that the Cobenfy made it worse.
I do not have any of the other symptoms, like urinary retention.
I did just read that now they’re saying Cobenfy “might cause some weight gain”. Of course it does. Why am I surprised? I have gained a little over ten pounds, and as I said above, I had lost almost 60. Now - I can’t say this is all med or med at all, because max to be fair, I haven’t been on my usual diet and exercise regimen in a few months.
Ok - now on to what it does for my brain.
My pdoc put me on it as an adjunct to my geodon, and lowered my geodon dose to 60 mg, 2x/day. I got up to the 100s, and was taking it for only a short while, and my affect was getting flat. I wasn’t a zombie, but totally apathetic. I just didn’t care. Could feel no passion for my creative projects, which destroys me - if I don’t have that, my life is empty. So we dropped me down to 50 once a day. I will say it did get rid of the last of my voices that were hanging around on just the geodon. It’s eerily quiet in my head, to the point I kind of miss the chorus I heard in my air conditioner and fans all the time. They were a touch stone for me, kind of like letting me know I was myself. But I’ve gotten used to it being quiet.
So it is working. And working wells I just couldn’t take the higher dose, and I didn’t give up my geodon. Between this and the memantine I just started for my OCD, and a bump in my adderall - I am feeling really good again. Very calm. Very even. And I’m very productive (except for cleaning my house - that’s still hard!!), as much as you can be with Schizoaffective. If you met me, you wouldn’t know I have a mental illness. I am back to working on my novel. I don’t think I could hold down a regular job, but I’ve never been able to. I do still hide in my house a lot. But overall, I’m better.
I am going to wait to see if going back on my eating and exercise regimen gets this weight gain off of me. If it doesn’t, I will get off the Cobenfy and back to just geodon and I’ll deal with whatever mess that leaves me. I can’t live my life overweight, but I can’t live my life with those terrifying voices, either. So… I don’t know. We’ll see.
Just wanted to give you all an overview of one person”s experience on this new med!
Happy New Year, everyone!!