Anyone’s negatives get worse on Cobenfy?

Medications
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Hey, everyone. Pandy here (from the old site). I had posted something lengthy about my experience on Cobenfy, but I did it on the old site before I knew we switched to here.

At that point, I think I was still cautiously praising Cobenfy. Yes, it makes me nauseous, and if I don’t take it with A LOT of water, I get the worst heartburn of my life. Feels like someone jabbed a red hot piker into my sternum. I had titrated up to the full dose, 100/I always forget the second number, twice a day. Using it as an adjunct to Geodon after I had a small-ish breakthrough psychotic episode. But the dose that high made me flat. All the negatives. So Pdoc dropped me down to 50 one time a day. That was fine, my voices? Completely gone. To the extent that I actually missed them, at least the nice/harmless ones. It’s definitely too quiet in here.

But here I am, months later, and my negatives are still bad. Really bad. I finally got out of bed three days ago after spending almost 2 weeks staring, not showering, not talking to anyone, etc.

I’ve always been a normal blood pressure, but high heart rate person, but Cobenfy raised my resting to 115!!! A cardiologist had to put me on meds to slow it down.

In addition to the negatives… before I started Cobenfy, I had lost almost 60 pounds (thank you, Clozapine for the gain, thank you Geodon for the loss — healthy eating + exercise, no weight loss shots). I have now gained back 13 because I can’t seem to stop eating. Or obsessing about food — that’s more it. It’s like I obsess, and don’t care what the result will be if I binge on a huge pile of sweets. If I gain weight, whatever. Exercise? Don’t care. Not interested. Can’t seem to make it an habit again. Then my clothes started getting tight, and I was like NO. I’m not doing this.

I think the weight gain started around the time I started Cobenfy. Coincidence? Maybe. But I did find one small piece of literature on the internet that said Cobenfy might not be as weight loss-y as they thought. Who knows. Maybe it just flattened me out to a point where I don’t care about my body anymore. Which is a good enough reason to get off it.

Anyway, I stopped taking it this morning. I talk to my pdoc in two days. He believes me anecdotally over what it says on the bottle. All of our bodies are different.

So… was just wondering if anyone else had experiences similar to this? Or am I a unicorn? I can’t seem to find anyone anywhere who’s had this reaction to Cobenfy.

Thanks in advance for any and all responses!!

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I took Cobenfy earlier last year. This, what you described, is what I remember most about the experience. I had to stop it because of that acid heartburn feeling. It did help with positives, not sure about negatives. I felt pretty good on that med, but yeah, the side effects were too much.

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Glad to see you posting pandy I remember you. Good things

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I’m sorry it didn’t work out for you, especially if you were feeling better on it (minus the evil stomach stuff).

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Cobenfy made me really ill.

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Heyyyyyyyyy!!! waves

I was doing better for awhile there, particularly 2024-mid-25. Now I’m struggling again, and it’s really frustrating because I took on some big projects during the “good” moments that need to get done, and it’s SO hard.

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All we can do is keep moving in the right direction. The rest takes care of itself

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I was able to tolerate that, for the most part. I just don’t like everything else it’s doing to me.

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It mutes my voices, mainly helps with insight. No real effect on negatives for me. Had the nausea but it faded. No heartburn.

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No advice on this thread from me. Just saying “Hi” and “welcome” @Pandy

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I haven’t tried Cobenfy because it’s not approved in my country. But after having lowered my injection as well as cut the amount of the Seroquel tó 50 % of the original dosing I feel especially this evening that the secondary negative symptoms to my condition have improved slightly. I personally don’t believe that Cobenfy makes primary negative symptoms worse or better than most of the wellknown antipsychotics. I’m also walking between 2 and 4 miles a day and that may also have contributed to my negative symptoms slightly improving.

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Thank you!!

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Yeah, I definitely have to make exercise a regular habit again. I was doing so well, and then.,. I wasn’t.

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BOWENS!!! Hi! How are you? Look at you! You’re a mod now!!

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My negatives got worse all of a sudden last November, I read some studies that say negative symptoms of schizophrenia may worsen with age, maybe that’s why?

I got on sarcosine, eat enough vitamins b6,9,12 ,zinc , probiotics through sauerkraut and 2 oyster daily and it recovered a bit….was still a bit depressive and unable to recall much short term memory though…then I took nac, l theanine , wheat germ oil and cognitively got a lot better , negatives almost recovered fully now

I am going to try lion’s mane next month

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Negatives take your energy and motivation. An aging body does the same.

Double jeopardy.

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Update:

Today is the second day in a row I didn’t take my Cobenfy. It doesn’t have a long half life. I already feel like my brain has been let out of prison, though I’m a bit irritable. (I’m doing work that would make me irritable no matter what I was taking, though!!)

I’m going to propose a radical option/solution to my pdoc tomorrow: since Cobenfy got in my system and worked so quickly, and seems to leave quickly, as well, maybe he’ll ok use of it as a PRN for breakthrough psychosis episodes? It definitely calms the positive symptoms down.

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Hey @Pandy ! I’m actually the administrator of this site. Thanks to the members generosity, we were able to raise the funds to keep this site open for a year or so in just a few short weeks once we heard the old site was shutting down.

I am confident we will be here for many years to come. Maybe even until I croak and someone else can take over.

Ribbit

Edit: Oh and in response to your question : I am good. I am married now and bought a new house early last year.