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aripiprazole - any experiences?

18 replies

smartiecake · 11/05/2023 13:26

My son is a teenager, he has autism and is having a severe mental health episode at the moment. He has been on sertraline for 3 months but we are not seeing much of an improvement, maybe some slight improvements but he is still self harming daily and having huge meltdowns and threatening us (all new behaviours he has never done this before he was unwell).
The Psychiatrist has suggested trying aripiprazole instead but after some googling it scares me the leap in the medication. However I am desperate to get my son well again.
Has anyone had any experiences with aripiprazole? Thanks

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rhetorician · 01/06/2023 20:26

No advice, but following - my kid is 14, ASD, went for ADHD assessment and psychiatrist said he had bigger concerns - anxiety, intrusive thoughts etc, so starting him on aripiprzole.

smartiecake · 01/06/2023 20:44

@rhetorician The Psychiatrist has requested the blood tests and ECG for DS before we have a follow up appointment. I would be interested to hear how your DS gets on.

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rhetorician · 01/06/2023 20:48

V low dose for now...i find it tricky because a lot of the time he seems kind of ok - out with friends, but we do see a lot of horrendous temper outbursts which have always been there in some form - but with ASD as well it's hard to know one thing from the other. He seems very relieved about the idea of medication, so we'll see

Lougle · 01/06/2023 20:49

DD1 is on Aripiprazole. We took it cautiously, starting at 1mg and now after a few months on 5mg. She has had some dizziness and light headed episodes, a little nauseous in the early days. Generally fine. It's really made a difference to her where sertraline and fluoxetine didn't help at all.

smartiecake · 02/06/2023 16:02

Its really helpful to hear others experiences. Thanks both. @rhetorician my DS is the same often is OK and has calmer times the sertraline has helped improve things but we still have horrendous bad days and self harm and repetitive intrusive thoughts. @Lougle how long did it take to see an improvement? Do you know how long they have suggested your DD stays on it?

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cowzen · 03/06/2023 22:45

Can I join in. DC has been on sertraline which has had little effect. Just started quetiapine but I’m not sure that’s helping either. We’ve been in this spiral since January and both exhausted.

Lougle · 03/06/2023 23:01

@smartiecake it was a lot slower than olanzapine. Olanzapine was almost instant. Aripiprazole took three days before we saw any change, but it's been a gradually improving picture. Not a miracle for us, but an improvement.

smartiecake · 04/06/2023 18:34

Thanks @Lougle . I want a miracle especially after a really really bad day today.
Hi @cowzen I'm utterly exhausted as well. Ds has been self harming since October but hasn't coped well for nearly 2 years. We get no break from him/no respite and we can't leave him alone. I think I'm close to breaking point myself now.

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Gtsr443 · 09/06/2023 08:56

Hello everyone - I was just about to post about Aripiprazole when I saw this thread.

My son (16) has been on Aripiprazole for about 5 years for Tourette's. (He is autistic and has OCD).
The paediatric psych started him on a tiny dose and slowly increased them and monitored his health regularly.

He is on now 5mg which really doesn't appear to be helping much now.
But when we tried to take him off of it he went completely haywire.
We are going to try a higher dose of 7.5mg to see if there is any improvement. The last time we tried that dose he felt very unwell - dizzy and spaced out.

He has to have three monthly blood tests because the Aripiprazole causes a drop in WBC and neutrophils so much so that a haematologist was involved to advise us. He is so desperate to see his tics improve as he starts college soon.

smartiecake · 09/06/2023 14:50

Hello @Gtsr443 gosh 5 years is a long time. Has he been on it consistently all that time? Its a shame to hear that you don't feel it is working now. Have you noticed it has helped at all during that time?
The Psychiatrist has phoned today and the ECG is booked so all being well they are looking to start DS on the aripiprazole/risperidone at the start of July.

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Gtsr443 · 09/06/2023 23:07

Hi @smartiecake yes consistently apart from one week where we tried him without it and he was terribly unwell - so we resumed it immediately.
My son started on a very very low dose and built up slowly and gradually. He's decided to try a higher dose now to see if it helps him but he'll have to have blood tests increased to every 4 weeks which is a nuisance.
My son didn't get on well with Sertraline so he's been taking Fluoxetine for a couple of years. Apparently it's supposed to work well for OCD. It's hard to know how effective it is because he's still struggling but I imagine that without it he'd feel worse.

Best of luck for your DS and the Aripiprazole. Don't be alarmed if he feels a bit spaced out on it initially. It takes time for the body to adjust.

So hard all of this isnt it? Just wish I could make him better.

smartiecake · 10/06/2023 09:04

@Gtsr443 thank you.
It is the hardest thing 😪 DS is so poorly with his MH he is not 'him' at all and Its awful to have to see your child suffer. Like you I would do anything to make him better. I hope the aripiprazole gives him respite from his own symptoms.

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cowzen · 10/06/2023 09:11

It’s so hard isn’t it. Our psychiatrist has agreed to switch DC from sertraline to fluoxetine - along with quetiapine - but I’m starting to realise this is a long road.

Gtsr443 · 10/06/2023 10:03

@smartiecake everything crossed for the Aripiprazole. It is hugely popular because it is effective. Are they offering CBT or anything?

@cowzen Fluoxetine was definitely the better option for my son. He tolerates it very well and he is on a high dose - but it does suppress his appetite (which wasn't great to begin with). Yes it's a long old road and just when you think you've got the hang of something a whole new challenge will pop up.

smartiecake · 11/06/2023 11:14

The Psychiatrist said DS would need therapy to tackle the issues we have, but pretty much said they are in a dire state at camhs so there will be a wait but he would speak to the team.
Yes sadly I think this is going to be a long road for us too 😢

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rhetorician · 17/06/2023 20:02

Just following up to say that we have seen quite the change in him since starting on the medication - we've gone from 2.5mg to 5mg - it does make him feel pretty tired he says, but hoping that will rebalance in time. Mood wise (from our perspective) he is much improved, but I think he doesn't feel like himself. So we'll see

smartiecake · 18/06/2023 08:47

@rhetorician thats positive that you can see a change. How long has your son been taking it for now? And did he start on 2.5mg? Is he happy to take them?
It's so hard isn't it? My DS is so intolerant of everything he isn't really able to leave the house as he is distressed by so many things but equally is extremely irritable at home with us or any external noises. He only has one friend and hasn't been well enough to see him for months. He has no quality of life so I'm hoping the new meds when he starts them will help.

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smartiecake · 28/07/2023 23:05

DS has been given risperidone, not aripiprazole. He has been taking 1mg a day (2 x 0.5mg) for 3 weeks now and is slightly improved but still extremely irritable and intolerant. He also has Autism so its hard to unpick how much is now becoming his behaviour and routine from Autism and how much is poor mental health. He is unbearable most days and its getting me down so much now 😪.
We have a review with the Psychiatrist in 4 weeks but it feels like an eternity away, i do think he needs his medication increased/amended as he is still so unwell and unable to cope with anything.

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