I’m grateful that I can come back to this support group when things start unraveling at home!
A quick update- my son whose AP quetiapine is being reduced gradually is starting to exhibit withdrawal symptoms. The pdoc is waffling between saphris and zyprexa. Has anyone had experience with both these APs? Which is better? My boy is not depressed so I’m not sure if Saphris would help him.
@Maggotbrane i have valued your insightful advice in the past and thank you for that. In the past, my son has gone manic after Rexulti and later after taking the antidepressant Pristiq. So I know for sure that anything that bumps up the dopamine is a no-no for my son. Are you familiar with Saphris? Is it an activating AP? Rexulti resulted in my son losing total control over his words and actions. Recently a naturopath advised him to take CoQ10 and this supplement caused him to be hyper and angry. All this is so confusing!
If anyone has some knowledge about Saphris I would really appreciate some help here. Thanks!
@Terra sorry, no experience with Saphris. I did a little reading, and judging by reviews it’s slightly better liked and tolerated than most, but not without its detractors. It’s taken under the tongue twice daily and is flavored with a wild cherry taste that can be polarizing. I personally don’t care for the added complexity of multiple dosages, but some people like it because it’s taken before bedtime and can help with sleeping.
While akathesia and other “activating” type side-effects are listed, reviews don’t mention this side-effect much, so I don’t think activation is a prominent side effect. Somnolence (sleepiness) seems more common . I’m not too clear on its effect on dopamine, but one reviewer indicated she thought it depressed dopamine and recommended eating a banana after dosing to counteract this effect, but I have no opinion on the efficacy of this.
You are welcome to look at the reviews yourself. When researching drugs I usually split my attention between drugs.com and the manufacturer’s websites, but I realize this can be slow going due to medical and pharmaceutical jargon, so I look at reviews too. While the information needs to be taken with a grain of salt because it comes from lay people and participation is not controlled, It can be helpful to hear these opinions regardless. Judging from overall reviews for people with SZ, Saphiris is third highest rated, below Closapine/Closaril and Seroquel, but not commonly reviewed. There are significantly more reviews by people with bipolar disorder, so I’d venture a guess it’s more of a niche drug for SZ with a smaller, but rather loyal, “fan base”.
Thanks as always @Maggotbrane ! Just picked up Saphris from the pharmacy. The pdoc decided on this AP because he was worried about zyprexa causing weight gain. It’s been a long, endless journey without any reprieve. There are more days now when I just want to lie down and not wake up. That would be a luxury at this point. Yesterday was the last straw when after taking CoQ10 my boy was so angry and agitated I was petrified! He threatened to hurt me if I ever hospitalized him.
Fingers crossed Saphris might help. Just wishing and trying not to give up.
Hi @Terra How is it going with Saphris. My son had has been on Zyprexia, but only a very small amount, 2.5 mg. As it had caused so much weight gain and sleepiness. But, he had a break through episode 2 weeks ago where he jumped off our upper deck onto the lower pavers. Breaking a paver and hitting his head. When the EMTs arrived to help him, he hit one. They left and he proceeded to jump, hit windows, and throw things in the house. The police arrived and they had me leave the house. They waited until he came out, then they cuffed him, put him in the ambulance, and now he is in a treatment center. He is now on Depakote with Zyprexia 10mg 2X per day. He says it is not causing adverse affects at all. They are giving him Depakote to help control the impulses. He says the Depakote helps him feel alert. I think he will be released on Friday. We are hoping he will be on an LRO. Then maybe we can find something that works better than Zyprexia. It is a long journey. My husband and I are exhausted as well. It was the scariest thing seeing him fall from the upper deck and bash up himself and the house. He says he doesn’t remember anything after me putting a cloth on his head to stop the bleeding after his fall.
Oh @PNWMom ! I’m so sorry to hear that your son injured himself. It is so sad to watch them unravel during these episodes. Hope zyprexa at a higher dose helps your boy stay stable. I have read good reviews about the AP except for the weight increase.
We’ve been going through something similar for the last 7 years. We’ve tried Risperidone (he’s still on it -4 mg), Paliperidone, Rexulti (the worst reaction-he got arrested after injuring a friend)and he claims he doesn’t remember that! He’s now on quetiapine low dose b.i.d, lithium and epival. And, Pristiq, an antidepressant set him off!! So, activating APs are not for my son.
The pdoc chose Saphris for him. He started with 5 mg for a week and we didn’t see much of a difference in his positive symptoms. He’s pacing a lot and there’s some anger in his self-talk. He’s buying aquariums and accessories on a daily basis. Sigh! We increased Saphris to 10 mg @pm and still he’s ranting pretty much all day.
I feel like we are at a dead end.
Please update about your son when you get a chance. Its nice to lean on one another. No one else can understand what we are going through! Best wishes to you and your family. Take care.
Thank you for the response @Terra. Sounds like we will avoid Rexulti and Pristiq. I will let you know how the 10mg Zyprexia combined with Depakote goes after he is released from the hospital this Friday. When I talk to him over the phone, he sounds pretty good. But, who knows long term.
Yes, thank goodness for for this forum. It is one of the only places I can find other caregivers who know what we are all going through.
Best to you and your family, and son as well. I hope something eventually works.
Good luck on Friday @PNWMom ! We are not having much success with Saphris. Having said that it seems like it’s helping some people in the Sz forum. Everybody’s biochemistry is unique. So don’t rule out Rexulti and pristiq but just watch your boy for any sudden change in hyperactivity. We noticed that within few days of using Rexulti and pristiq.
If zyprexa and depakote works for your son, you might just have the right combo.
Stay in touch. Take care
@Maggotbrane , in my last reply to you I mentioned that the pdoc started my son on Saphris more than a week ago. The past week has been a nightmare!! My boy is angrier and ranting more than ever. His speech is slurred and both his arms are getting numb off and on. He looks disconnected. His aquarium hobby is getting out of control. When we emailed the pdoc, he said to increase the dosage from 5 mg to 10mg. And this was bad advice. The boy almost hit my husband when we were out on an errand. It was chaotic in the car!
You have lot of sage advice when it comes to handling such situations until the pdoc sees my son. My question to you is how long do we wait before we decide that this AP is not for him? I’m worried that we shouldn’t wait but try and get a prescription for zyprexa/zydis.
Thanks as always for your thoughts!
Best wishes
I’d be frank with your doctor. It sounds like you think this medication is a mistake and is making the situation worse and you are losing faith with it. Tell him that. I’d also consider your options for changing psychiatrists if he isn’t flexible.
Don’t be too timid. I had a switch to a medication that went poorly, and I stuck it out too long, but when I made it clear to my psychiatrist that I wanted to go back to an old medication I was more comfortable with, he did it right away. If I had voiced my concerns earlier, I could have saved everyone a lot of grief. I also had a disastrous first consultation with a psychiatrist who did not listen to me and my needs, I walked out and didn’t return to see a psychiatrist until a year later. If I’d had a second opinion, I might not have suffered a year unmedicated.
Thanks @Maggotbrane ! It has been a challenging weekend and we’ve decided to take a leap of faith and insist on zyprexa/zydis for my son. Of course, there is no guarantee that this is the one. There’s the fear of diabetes, sluggishness and cognitive decline. We are going to have to cross that bridge when we get there. Take care @Maggotbrane . I hope you don’t mind that I keep reaching out to you.
How is it working out @Terra. We were worried about Zyprexia also, but that is all my son will take. Fewest side effects for him. We were told by a psychiatrist that all second generation drugs are neuroprotective. Unlike first generation drugs like Haldol which cause cognitive decline.
My son has chosen to be more active and eat more of a Keto/Atkins diet. He has lost 40 lbs in the last 4 months. He is taking 20 mg Zyprexia/day.
Hi @PNWMom ! Things are calmer after zyprexa/zydis was started (titrated up from 5 mg to 10 mg). Saphris was a disaster!! My son was constantly pacing and raging. I put my foot down and insisted to the pdoc that we needed something else. And so, we are at 10 mg zydis now. We gradually got him off Seroquel. Now we are tapering Depakote because he’s already on Lithium and thought that depakote may not be necessary. What’s your opinion about depakote and lithium? Has your boy tried lithium?
My son still has some positive symptoms but way better than before. He is experiencing severe withdrawal symptoms now that Seroquel has been stopped. He’s fatigued, has intermittent palpitations and is not too motivated.He won’t leave the house fearing that he will have a heart attack! Our goal is to give him one AP (zydis) and one mood stabilizer.
It’s heartening to see that your son is losing weight which is awesome considering zyprexa’s reputation! He seems to be functioning well on zyprexa 20 mg which is great! Doesn’t he feel groggy and dull during the day? Is he working? Sorry about all these questions! I feel our journey is similar and we could compare notes.
Hello @Terra, Yes my son still hears voices or Spirits as he calls them, but they are fewer & the volume is less he says then when he was only on 5mg Zyprexia. He is a bit groggy during the day, but it seems to be getting better. He has never tried lithium, although it has been suggested to him by a Dr. at the hospital. He invests a lot of time researching APs. So somehow he has an idea that Li has bad side effects. He is very concerned about TD, as he got it badly from Haldol & Abilify which were prescribed to him during his first hospital stay.
He did gain nearly 80 lbs in the first year he started Zyprexia. We have been very concerned about that. Then in the last few months he figured out how to control his appetite and weight.
He hasn’t worked in awhile as his last episode started in July. He keeps busy with odd jobs around the house. Repairing the fence, painting, putting together patio furniture, walking our dogs etc. Tomorrow he has an interview. I’ll let you know how it goes. All the best!!
Thanks @PNWMom ! Sounds like higher dose of zyprexa is more effective. My son is seeing his pdoc next week for review of his symptoms and sideeffects. He’s trying hard to finish his university courses but the Seroquel withdrawal and the new AP is slowing him down.
Good that your son reads up on APs and keeps himself busy with chores around the house. Must be a relief to have some semblance of normalcy in the household.
Best wishes!
