Psychiatrist appointment

DX'd - Sz/SzA
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Had an appointment with my pdoc this morning. It’s my first appointment with her and she wants to add Vraylar. I’m scared. I’m on a decent dose of perphenazine right now and she’s worried if I stay on it too long that I’ll get bad side effects and TD since apparently I’m at high risk due to my genetic disorder.

So, what do I do? She says she would want to start adding Vraylar in for at least 6-12 months before lowering the perphenazine dose. So that makes me feel a little better. But I’m still really scared. I’ve never made it more than 2 years out of the hospital, and this week marks 2 years.

Help? What would you do?

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I would love to be on Vraylar.

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Why? Can you explain a little? I’m really torn and scared about the idea.

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Its the best there is for my negative symptoms. Its a similar med as Abilify and Rexulti, partial dopamine agonists, but no addiction or hypersexuality risk. Partial dopamine agonists are the only meds that I have no negative symptoms on.

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Did a med not work before for you?

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I also heard Vraylar is a really good med and that it is weight neutral and the best for if you have problems with high cholesterol. I thought about switching to it too. But I am stuck on an injection.

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I’ve been on 12 meds. Perphenazine works the best. I do really poorly in atypical APs. Did okay on Abilify the first time, but definitely had really bad hypersexuality.

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Then you shouldn’t have hypersexuality on Vraylar. Only Rexulti and Abilify have warnings by the FDA and Health Canada about hypersexuality and addiction side effects. Its similar to Abilify in its mechanism of action, partial dopamine agonist, so least side effects possible like weight gain, etc

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If I were already on a lot of medications I would say no. I hate to add medications.

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The idea is to eventually be able to replace the perphenazine with Vraylar. Just a very slow, 2 year process.

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11

I am learning the hard way that you do actually have to rely on these professionals.

One would hope she is nice and competent, and is doing the change to help you along.

Trust is key.

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Yeah. It’s just hard. It’s not that I don’t trust her, it’s that I don’t trust the way my body will react to the meds.

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It seems to me that the time frames you have been given are super cautious

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I think you should give it a go.

If the perphenazine is being lowered slowly,

I’d do it.

I know you don’t want to risk messing up your already solid med routine,

But sometimes we have to make adjustments.

Maybe keep a journal of your symptoms so you can compare how well you are on/off that particular med.

Share that with your pdoc and it’ll keep you on the right track.

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See how it goes for a while and let them know what’s going on. Hugs. I hope vraylar works.

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I just called back and told her I’d try it. Hopefully she’s not gone for the day yet and she can send in the script.

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Yeah. I’m terrified of losing it again. She said she’ll add on the Vraylar for about 6 months before changing the perphenazine. Make sure I react well to it.

I’m still a little scared that it’ll make me crazy, though. That maybe I’ll mess up how well I’m responding to the perphenazine. I’m kind if out of options for meds. It’s Vraylar and clozapine. Everything else has been tried or isn’t available to me. So I’m really really nervous about messing up a good thing.

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All I can really say is that try not to let your fears take over otherwise it becomes a self-fulfilling prophecy of failure.

I have found that being worried compounds how you’re feeling on med changes - I have had 6 of them so far.

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At one point I was on Haldol and doing well. My pdoc took me off of it citing that it was an older med and had more potential for metabolic problems and other side effects. She started me on the path to newer meds and now I’m on very new meds and am happy with them.

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Yeah, I can’t handle atypical APs, so I’m extra nervous. I’ve tried 12 different meds and all the atypicals caused severe and really fast weight gain and didn’t do anything to help or made me worse. The only exception is when I was first diagnosed in 2004 I was on Abilify successfully for several years. But after I went off it I started getting terrible side effects every time I tried it again.

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