u/EmotionalMaximum4314

Update: He finally connected with his psych and she agrees that the symptoms are concerning. After discussing the pros and cons of going completely off Caplyta, she's giving him samples of a lower dose for a few weeks while he follows up with his PCP about getting specialist appointments and further blood testing. So that's a step in the right direction. He thinks the severe abdominal pain this AM may have been prompted by feeling a bit better over the last few days and experimenting with foods his GI tract wasn't ready for. He's going back to liquids for a few days. Just trying to reduce the variables as much as possible.

Orig. Post: I posted a couple of weeks ago that overall, my husband's experience has been positive, while I've been withholding judgment. Just a few days later, things took a pretty weird turn. He has been recovering from an episode of diverticulitis that left him hospitalized for 4 days. Since then, he's had to return to the ER twice. The first time it was renewed abdominal pain - they checked everything and said it was dehydration and released him. The second time (a few days after my last update) he was having weird chest pain and went to urgent care, they did an EKG and said it was abnormal so he needed the ER. Frankly the ER treated him very poorly, but one new symptom he had been experiencing along with the chest pain (a new symptom they entirely ignored) was that the blood vessels in his arms were overly swollen, his hands were swollen and beet red (including the palms) and severely itchy. When the nurse attempted to put an IV in, the blood vessel sprayed like a firehose. She said she'd never seen that in 12 years of nursing. Anyway at the ER they redid the EKG and did a chest xray and said it was probably an electrolyte imbalance and sent him home.

The next couple of days he would have a flareup of this weird new symptom every time he took Caplyta. I had been wondering for weeks if Caplyta was somehow inhibiting his recovery from his illness, and had suggested a couple of times that he should ask his pysch about this possibility, but he had been resistant. Now with this new freaky symptom, he was finally ready to consider that it might be Caplyta, but it was now the weekend and he couldn't reach his psych to ask, so he decided to simply test out not taking it for one night. That night his arms and hands did not puff up and while they were mildly itchy, it was bearable. The following day he slept about 20 hours, but said it felt like restorative sleep. He skipped Caplyta a second night, and no recurrence of the symptom. Slept 20 hours the next day too, and had a pretty bad headache, but continued to say he was feeling like his body was recovering. Skipped Caplyta a third night. Still hadn't heard anything from his psych despite reaching out a couple of times via text.

The next day his energy was continuing to come back... but so was depression rearing its ugly head for the first time since beginning to take Caplyta. We both panicked a little bit, and that evening he decided to take it again. I suggested dumping out half the capsule for a half dose, but he decided to just take the whole. Next day (yesterday), his gut pain was back and so was the sense of being parched and unable to quench his thirst, which had been relieved when he didn't take it those couple days. I believe he took it again last night. This AM, he is in agony with severe abdominal pain and urgent trips to the restroom - much worse than the original onboarding of the drug.

So... we are in a pickle. I know we need to reach out to his psych and pester her until she responds, but there are many other things going on - trying to schedule various specialists to follow up on his gut issues, other family members hospitalized, one car totaled and a second car possibly a loss as well, substance abuse by young adult kids... it just feels like the last month has been one long lightning-and-hail-storm. We can't keep all the balls in the air we are juggling. It's clear Caplyta has a noticeable effect in keeping him non-depressed AKA psychologically functional. But if it is causing physical debilitation, it's a wash. IDK.

My husband's been on Caplyta about 8 weeks so I thought I would update about our experience.

After the 3 days of headache and GI symptoms, he had about 2 weeks of something like hypomania but a little different. He did not crash into depression after, but simply settled into a baseline somewhat more optimistic than previously.

Around week 4-5 he developed diverticulitis and wound up in the hospital. They initially diagnosed a UTI and gave him a week of antibiotics but it didn't help at all and he was admitted for 4 days. I have no idea if the GI infection was related to Caplyta but I figured it's worth mentioning. It will be a long, long recovery. He is still in pain and feeling very weak, and that's contributed to bouts of poor mood, but I don't know that I would call it depression - just poor mood from being sick.

All in all, his assessment is very positive. He does not want to try to decrease dosage or mess with it in any way. He says he's never felt so "OK" in his life.

My assessment is more muted and I'm still withholding judgment. The first two weeks were wonderful. The second two weeks were pretty great. Since then, he's been so sick that I can't know for sure. So far, his strained relationship with his kids (late teens/ early 20s) hasn't really improved - he still takes what they say and do (or don't say and don't do) very personally and vacillates between extremes in his reactions to them.

I'm hoping to convince him to finally try therapy again now that Caplyta has elevated his baseline. I think he needs some expert guidance in how to repair some of these relational rifts that have arisen in the context of his mental health conditions, especially considering that the kids have their own MHCs they are struggling with.