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Coming off Aripriprizole, help please!

16 replies

imacroissantgirl · 07/05/2025 20:39

Ds prescribed Aripriprizole after being on Amisulpride for 20 months due to a second psychotic episode.
He really wanted to come off the Amisulpride due to weight gain so, has been on 5ml aripriprizole for about 4 /6 weeks. Has now announced he wishes to stop this one all together due to side effects (not sleeping well, headaches and some muscle twitches). He’s stated ‘well, I can’t be on them forever’..
He spoke to his psychiatrist who said it was up to him if he wanted to stop them.
As parents who have been on the journey with him of two episodes (both times resulting in sectioning) we are very cautious. None of us can afford to go through another crisis, it will break us all AGAIN, then take another two years recovery…
Surely there should have been some advice as to tapering off this medication?
The early intervention in psychosis (they didn’t officially diagnose but we were told a mood disorder) have been helpful but as he’s now discharged from the 3 year support, we have no crutch, apart from adult mental health services via GP, that’s why I’m turning to the professionals that may be able to assist on MN.
As a family we have discussed the triggers and the symptoms but in the past going into psychosis was like a bullet train and there’s no controlling him when he’s unwell. The psychiatrist said he could just start the meds again if he feels a wobble…
it just doesn’t seem great advice!
On the plus side, he’s been well for over 10 months and is a steady non-stressful job, is socialising and by all accounts back to himself.
Please be kind I don’t want to catastrophise but my Dh and I are very concerned.
What the likelihood of another episode if he stays well?
Thank you

OP posts:
2024onwardsandup · 08/05/2025 04:46

Can you get private psychstric support!

Climbinghigher · 08/05/2025 05:27

Have the muscle twitches started since starting to taper? That may be a withdrawal tardive dyskinesia which might get worse if he suddenly stops. I find psychiatrists often very cavalier about stopping/changing meds because they don’t deal with the fall out. Although I am assuming you only have your son’s report about what was said so it may be what he wanted to hear. I suppose if that was said it means the psychiatrist believes he may not have another episode.

He would be better waiting until the twitches go away then reducing again. I believe (& have observed) that for some people tapers need to be very slow. We have had massive fall out from my son chopping and changing meds way too quickly.

Could you encourage him to look at a different antipsychotic which might suit him better?

It’s really hard and it sounds like he is going to stop them whatever you say. The right counsellor may be able to work with him to look at other ways to keep his weight down and encourage activity and also to support him to start to notice when his thought processes are going awry. Although I take your point it is very fast. That work prob needs to be done while he is well.

If he doesn’t want that can you talk to him about the consequences for you & how difficult it is when he has an episode. Is his psychosis dangerous for you? If it is you need a safety plan of some sort (which may be 999). Again this needs to be done while he is well.

He may need to come to terms with medication being lifelong for him (or at least long term) but he may need to try again. I can understand why the side effects feel unbearable and you could try and encourage him to talk dose and type of drug with his psychiatrist.

i’n sorry, it’s very hard. You don’t say his age, but at some stage, while he is well you may need to start to discuss his responsibility for managing his illness and for dealing with the consequences (if any) of his decision making. I can understand his desire to try and get off the meds - antipsychotics are horrible drugs, and I fully understand your concerns. It may be that he eventually finds he does need these drugs. But he also has to understand his responsibility for managing it - and recognise the impact on others.

Is there some sort of support group for family members? My son is on antipsychotics for aggression (non-verbal, learning disabled) and I grapple with wishing we’d never started the bloody things but also recognising that unfortunately he seems to need them. We only found that out after a number of attempts to taper. And we met still try and taper off in the future. . It’s hard to find the balance so I do understand your son’s concerns - and also yours - my son’s responses to coming off have been bloody awful so I really do understand your concern.

IHateRain76 · 08/05/2025 05:48

It's really common for people to want to stop the meds OP as they are very unpleasant weight gain, no feelings etc, etc. Sometimes they are injected every few months due to non compliance. If he does experience another psychotic episode it will be severely damaging to all involved. Could he perhaps really, really, really slowly taper the dose down. I wouldn't believe what he tells you the psychiatrist says. I think these sort of drugs have the worst side effects bar chemo so I do feel for him and it is really common for patients to refuse them or divert them. That is annother thing to keep an eye on, say you make a plan to very, very slowly taper the dose you need to ensure he is still taking them. In my experience people stop taking them due to the side effects and often enjoy the mania that accompanies the first weeks of coming off them. That is of course followed by the much longer depressive crash. It is hard. Best of luck.

Somethingthecatdraggedin7 · 08/05/2025 06:04

I take 30mg of aripiprazole. I have had no side effects at all and it is a useful medication. I have been on it for about ten years. I am also a retired nurse and have had numerous patients on this and other psychiatric medications.
Just wanted to put the other side for anyone reading who thinks that meds are awful, the side effects are horrific etc.
Of course some people get some side effects but this is not always the case, nor even the majority.
There is no reason that your son can’t be on medication longterm, if needed.

ThePure · 08/05/2025 06:31

5mg is the minimum dose. It would be pretty hard to taper from there you’d need liquid. Stopping the minimum dose isn’t terrible advice and the psych can’t force an adult to make a different decision. Aripiprazole is about the most benign and side effect free one as well so nothing he can swop to.

would you ideally want him to stay on meds for life? For some people that is necessary but for others it isn’t. I don’t think you can blame him for wanting to try without at his age as the alternative is a lifetime on meds which have side effects. It is very common for people to want to try to come off and sometimes they only learn that it’s not a good idea after a further episode

I think all you can do is have an honest talk about how bad it was last time, the risk of stopping vs the side effects and get him to agree on and write down warning signs and that he’ll go back on meds if these happen.

Figure out the best way of getting speedy help. Might be via 111 mental health option if you have this in your area. If he’s been under first episode services he should have a crisis and relapse plan so dig that out and go over it

LangmaLady · 08/05/2025 06:47

@imacroissantgirl my DS is currently tapering off a low dose of Aripiprazole which was prescribed after a suspected psychotic episode about 6 months ago. He has been told to taper it by taking it every other day for 2 weeks with a view to then stopping. He is also supported by EIS who have not yet diagnosed. I think a diagnosis brings its own problems so they only do so if they absolutely have to. I think you can be on them long term if that is what is needed for his mental health to stabilise but do sympathise with your DS if he is getting side effects. DS has put on a bit of weight but I thought that was consistent with his reduced physical activity which comes from being so tired all the time. He is desperately trying to keep up a gym routine but lack of motivation and social anxiety does get the better of him. We are just hoping that his symptoms dont come back when he stops as we went through the most horrific 3 months last year. We have also been told that if he feels himself deteriorating again he can start taking it earlier to limit the damage. DS is currently well although not currently socialising and very reliant on family. He does have a part time job which he has managed to keep going but is reluctant to drive. Hoping that coming off the meds will improve his ‘foggy head’ and he will be able to concentrate more.
As with you our biggest fear is a relapse and in Sept DS will be facing the trigger which set it all off in the first place (his choice) although in a much more managed and supported way. I’m not a professional so can’t give advice but can share our experience and give a hand hold and a BrewCake.

imacroissantgirl · 08/05/2025 07:41

Climbinghigher · 08/05/2025 05:27

Have the muscle twitches started since starting to taper? That may be a withdrawal tardive dyskinesia which might get worse if he suddenly stops. I find psychiatrists often very cavalier about stopping/changing meds because they don’t deal with the fall out. Although I am assuming you only have your son’s report about what was said so it may be what he wanted to hear. I suppose if that was said it means the psychiatrist believes he may not have another episode.

He would be better waiting until the twitches go away then reducing again. I believe (& have observed) that for some people tapers need to be very slow. We have had massive fall out from my son chopping and changing meds way too quickly.

Could you encourage him to look at a different antipsychotic which might suit him better?

It’s really hard and it sounds like he is going to stop them whatever you say. The right counsellor may be able to work with him to look at other ways to keep his weight down and encourage activity and also to support him to start to notice when his thought processes are going awry. Although I take your point it is very fast. That work prob needs to be done while he is well.

If he doesn’t want that can you talk to him about the consequences for you & how difficult it is when he has an episode. Is his psychosis dangerous for you? If it is you need a safety plan of some sort (which may be 999). Again this needs to be done while he is well.

He may need to come to terms with medication being lifelong for him (or at least long term) but he may need to try again. I can understand why the side effects feel unbearable and you could try and encourage him to talk dose and type of drug with his psychiatrist.

i’n sorry, it’s very hard. You don’t say his age, but at some stage, while he is well you may need to start to discuss his responsibility for managing his illness and for dealing with the consequences (if any) of his decision making. I can understand his desire to try and get off the meds - antipsychotics are horrible drugs, and I fully understand your concerns. It may be that he eventually finds he does need these drugs. But he also has to understand his responsibility for managing it - and recognise the impact on others.

Is there some sort of support group for family members? My son is on antipsychotics for aggression (non-verbal, learning disabled) and I grapple with wishing we’d never started the bloody things but also recognising that unfortunately he seems to need them. We only found that out after a number of attempts to taper. And we met still try and taper off in the future. . It’s hard to find the balance so I do understand your son’s concerns - and also yours - my son’s responses to coming off have been bloody awful so I really do understand your concern.

Edited

Thank you, DS is 27. As yet not reducing just a discussion resulting in stomping off. I’m grateful that he’s for the most part measured and sensible, knows the impact the episode has had.
there’s just been a few muscle twitches so far, I’m not sure he’s been on this medication long enough…
He doesn’t have a counsellor.
After calming down, I had another chat and he said he was just going to go back to Amisulpride because he doesn’t want us anxious.
I agree with the Cavalier attitude from the psychiatrist but he did say that it might result in another episode. Olanzapine offered but that was a terrible drug for him (which if history was read they would know that).
For now, we’re going to have another chat about it in a few days. He’s got a holiday coming up, so see how he feels after that.
ps I feel for you too, it’s tough!

OP posts:
imacroissantgirl · 08/05/2025 07:48

LangmaLady · 08/05/2025 06:47

@imacroissantgirl my DS is currently tapering off a low dose of Aripiprazole which was prescribed after a suspected psychotic episode about 6 months ago. He has been told to taper it by taking it every other day for 2 weeks with a view to then stopping. He is also supported by EIS who have not yet diagnosed. I think a diagnosis brings its own problems so they only do so if they absolutely have to. I think you can be on them long term if that is what is needed for his mental health to stabilise but do sympathise with your DS if he is getting side effects. DS has put on a bit of weight but I thought that was consistent with his reduced physical activity which comes from being so tired all the time. He is desperately trying to keep up a gym routine but lack of motivation and social anxiety does get the better of him. We are just hoping that his symptoms dont come back when he stops as we went through the most horrific 3 months last year. We have also been told that if he feels himself deteriorating again he can start taking it earlier to limit the damage. DS is currently well although not currently socialising and very reliant on family. He does have a part time job which he has managed to keep going but is reluctant to drive. Hoping that coming off the meds will improve his ‘foggy head’ and he will be able to concentrate more.
As with you our biggest fear is a relapse and in Sept DS will be facing the trigger which set it all off in the first place (his choice) although in a much more managed and supported way. I’m not a professional so can’t give advice but can share our experience and give a hand hold and a BrewCake.

The hand hold is appreciated. It’s a lonely place. I wish you well with your DS.

OP posts:
imacroissantgirl · 08/05/2025 07:52

All interesting points of view, so, thank you everyone. My first serious post here on MN and it’s appreciated! Will respond when more time!

OP posts:
Climbinghigher · 08/05/2025 08:01

I’m pleased he is receptive to discussion. It is such a tricky road to finding the correct medication for someone (if indeed medication is the right road). We were lucky in that my son eventually found his way to a very cautious psychiatrist and that has helped in that I am now confident that, much as I hate the meds he is on, he is on the minimum dose that he needs - and that he does need it.

Much love to you all

Aquamarine25 · 14/05/2025 12:32

My adult DD has been on 3 different anti- psychotics for the past 2 years. Current one Olanzapine has worked in that she no longer believes she is being monitored/drugged but she can't shake belief that it did happen, she therefore doesn't believe that she had psychosis.
CTO coming to an end and I am terrified that she will stop meds altogether. We had no experience of MH issues and her illness has devastated us.
I'm sorry other families are going through this too.
Would an going support thread be helpful to support each other?

RachelsTrifle · 14/05/2025 12:46

If it makes you feel any better I came off Aripiprazole earlier this year with absolutely no negative side effects whatsoever. I had been taking it for about 18 months.

Aquamarine25 · 14/05/2025 15:32

Well done for coming off your meds Rachel & keeping well.
I don't know if that will be an option for my DD. She us very private and hates all the medical involvement, but Dr's think meds are necessary. Presumably because her thought lasted so long.

RachelsTrifle · 14/05/2025 17:19

Oh, I'm sorry @Aquamarine25 , my post was replying to the OP. I should have made that more clear.

I'm sorry to hear about your family's troubles and your daughter's ill health though. It must be very hard for you all. I guess I'm the daughter in the situation and I know my Mum particularly worries very much about me. I am also a very private person and resisted medical intervention for a very long time, it didn't do me any good but I couldn't face the thought of doctors involvement. I really hope your daughter can continue with the medication that helps her.

imacroissantgirl · 14/05/2025 17:45

Thanks to everyone that’s posted. The upshot is that DS has returned to the Amisulpride, because he didn’t ‘want us to be anxious’.
I think our faces said it all, it’s been quite a triggering week now thinking back to the episode and the trauma that went with it. He’s definitely safer on meds atm.
Aquamarine25 suggests an ongoing support thread? Excellent idea, for psychosis only? …. I’ve not been that active on here so, not sure how we’d go about that?
I’m sure it would really help :)
my heart goes out to you all knowing the difficulties that go along with this illness x

OP posts:
Aquamarine25 · 15/05/2025 19:07

Hi. I have started a new thread titled Support Thread for Anyone Affected by Psychosis.
Be great if people with lived experience or their families could share hope.

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