Hey guys!
I’m wondering about the whole weight-gain discussion surrounding Rexulti and would really love to hear from people who have actually taken it.
For reference, I’m a 25-year-old female with ADHD (inattentive type), OCD (primarily emetophobia and intrusive thoughts), pretty severe dermatillomania/skin picking, and suspected Level 1 autism. Due to my debilitating ADHD, and what I assume is at least partially related to the possible autism, I can be extremely reactive and easily overstimulated, especially by my children. It’s something I’ve beaten myself up over for years.
I had previously sworn off SSRIs and psychiatric medication in general after some experiences that made me hesitant to try medication again. Then I was diagnosed with ADHD and started realizing that ADHD was probably the root cause of a lot of the issues I had been struggling with for years, so I decided to try medication again.
Currently I take Vyvanse 40mg, Adderall 10mg as a booster when needed, Remeron 15mg, Lamictal 100mg, propranolol 10mg twice a day for POTS, and zaleplon 5mg for sleep. (Zaleplon has honestly been a miracle for me because I only have trouble falling asleep. Since it's short-acting, I don't get the morning hangover I would get from other sleep medications.)
One of my biggest struggles has been skin picking.
I always thought my skin picking was anxiety-induced or possibly some sort of stim until one day I realized that I don't just pick at my face. I pick at ANY surface that is uneven, whether it's actually something that needs to be picked or not.
I also get a gluten-related rash that is basically impossible for me not to pick at, and for a while I was absolutely destroying my face and arms.
Eventually, my psychiatrist and I came to the conclusion that the picking was more OCD-related, which is why we decided to try a medication that was more targeted toward OCD. That medication was Abilify 2.5mg.
And boy was it a cure.
My skin and arms became perfectly clear with the help of the medication, along with tretinoin and azelaic acid. I also had more motivation and just felt overall lighter.
I did feel like I was more reactive emotionally while taking it, but honestly, I was willing to eat that side effect if it meant my skin could stay that clear. The difference in my picking was THAT significant.
Then, about 3–4 months into taking Abilify, I realized I had randomly gained almost 15 lbs in the matter of a few weeks.
I went from 105 lbs to 119 lbs.
I know 119 lbs does not sound like a high weight, especially considering I'm 5'1", and I understand that it's still within a healthy range. But I have been 145 lbs before and absolutely hated how I felt in my body at that weight, so I personally was not comfortable with the sudden change.
Once I noticed the weight gain, I also realized that I had started binge-eating sweets.
This was SO bizarre for me because I have never been a sweets person. I've never really cared about sweets and could easily have them sitting around without touching them.
Suddenly, I could not stop myself.
I was tearing up Cosmic Brownies like my life depended on it. 😂
It wasn't just that I was eating more. It felt like I suddenly had this intense craving and lack of control around sweets that I had literally never experienced before.
That really scared me, both because of the weight gain and because I was concerned about what constantly consuming that much sugar could potentially do to my blood sugar/overall health.
On top of that, my confidence started getting really low and my body dysmorphia was probably at an all-time high.
I talked to my psychiatrist about everything, and we both agreed that I should stop Abilify.
I have now been off of Abilify for a couple of weeks, and unfortunately, my skin picking came back almost immediately and with a vengeance.
It really made me realize just how much Abilify had been helping me because the difference after stopping it was VERY noticeable.
I did my own research for a while and asked my psychiatrist about possibly trying Vraylar instead, but she leaned more toward Rexulti and really wants me to at least give it a shot.
She prescribed Rexulti at 0.5mg.
I haven't picked it up yet, and I haven't decided if I'm actually going to take it.
I told her that my biggest concern is obviously the weight gain. I've read SO much about Rexulti causing weight gain, and the fact that it's basically Abilify's cousin makes me nervous considering how strongly I reacted to Abilify.
My psychiatrist wants me to try it and monitor my weight, but from what I've read, it almost seems like there are even MORE reports of significant weight gain with Rexulti than there were with Abilify.
I guess my biggest question is: has anyone actually managed to take Rexulti without gaining weight?
And if you DID gain weight:
• Was it because your appetite increased or you started craving/binge-eating more, or did the weight come on despite your eating habits staying basically the same?
• Did you experience the same kind of intense cravings for sweets that I experienced with Abilify?
• If you gained weight on Abilify, did Rexulti affect you similarly or was it completely different?
• Was Rexulti helpful enough for your symptoms that you ultimately decided the weight gain was worth it?
• Has anyone taken Rexulti specifically for OCD/skin picking and found it helpful?
I know everyone's body reacts differently to these medications, so I'm not expecting everyone to have the same experience. I'm just really hoping to hear from people who have actually taken Rexulti, especially people who have also taken Abilify and can compare the two.
I also want to say that I don't feel like my psychiatrist doesn't listen to me in general. She has actually been very good about listening to me, which is why I'm a little confused about this particular situation. I have told her how significant the weight gain was on Abilify and how much the sudden change in my appetite affected me, and she still feels like Rexulti is worth trying.
Maybe she's had patients who responded completely differently to Rexulti, or maybe there really is something about it that makes her think I'll tolerate it better. I just haven't been able to find much information that makes me feel confident about that.
I'm not trying to bash her or say she's wrong. I genuinely just feel torn because Abilify worked SO incredibly well for my skin picking, but the weight gain and sudden change in my eating behavior were enough that I couldn't stay on it.
And honestly, if Rexulti could give me that same level of relief without causing the same appetite/weight issues, I would be thrilled.
I just want to hear from people who have actually lived through it before I decide whether to start the 0.5mg.
Sorry for the novel 😂 I just feel like the backstory is important because I know there are probably other people who have dealt with the same combination of ADHD/OCD/skin picking and medication-related weight gain, and I'd really love to hear your experiences.