weaning olanzapine: Hi everyone so I... - Action on Postpar...

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weaning olanzapine

biogulden profile image
32 Replies

Hi everyone so I have been taking Olanzapine after difficulties sleeping afterwards. It’s been over two months and am trying to come off it. I am currently taking 5mg but I want to stop it completely now. Does anyone have any experience about coming off Olanzapine? How can I wean off it safely?

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32 Replies
Lilybeth profile image
LilybethVolunteer

Hi biogulden

Welcome to the forum which is for mums and families who have experienced the trauma of Postpartum Psychosis. Can I ask if you have had such an episode? Here you will find helpful advice and shared experiences.

Olanzapine wasn't a medication I took during my recovery but quite a few mums here will be able to share their experiences with you. I'm not sure it's a good idea to come off it completely without supervision from your GP? Years ago I tried stopping my medication and it was such a bad idea, so I think weaning yourself off Olanzapine safely needs to be managed by professionals.

If you can see the forum page and your post, you will find 'Related Posts' on the right hand side which might be helpful to read until other mums are here for you. Take care.

biogulden profile image
biogulden in reply toLilybeth

Thank you for your reply. I hava a superviser but she sad that I can wean off it in one go. I think it isnt a good idea. So I want to learn people ideas about weaning off olanzapine.

Lilybeth profile image
LilybethVolunteer in reply tobiogulden

Hello biogulden

Thank you for our reply. I hope the other posts and links will be helpful. Is your superviser in contact with your doctor as to how you should wean off Olanzapine safely? Take care.

biogulden profile image
biogulden in reply toLilybeth

My doctor sad also that wean off it in one go. However as I read from others experiences it is not a good idea. So I have to talk about this next month with my doctor.

Pikorua profile image
PikoruaVolunteer

Good morning biogulden,

welcome to this forum! We are all mums, who have had Post Partum Psychosis.

I received help from this forum the end of 2015 as I was still struggling with

mental health challenges. This forum is a great place for advise, information exchange and listening.

Unfortunately I can not give you any specific advise on Olanzapine, but like Lilybeth

I have had a lot of experience with traditional meds throughout my hospital stay and during after care.

In my opinion weaning off meds has to be closely supervised by health professionals. I had to continue with a very high doses of three different types of drugs once I was discharged.

My partner was supervising my intake and taking notes about any change of behaviour. I was allocated a care coordinator, a Psychiatrist, who worked closely together with my GP. When taking Haloperidol, Risperidone and Lorazepam I was unable to look after myself and my son. My partner was my care taker full time.

Nevertheless there is a happy ending, I weaned off my meds with the help of everybody involved. I am so grateful that I survived and received love and care.

Please, do take care and hope you can find a health professional you trust and want to work with together in order to achieve your goal. Gradually and in steppingstones! Side effect can be immense.

x

biogulden profile image
biogulden in reply toPikorua

Thank you for reply. I hope I can also wean off my meds.

vlk86 profile image
vlk86 in reply tobiogulden

Hi biogulden,

I took olanzapine after experiencing PP in 2017 and I can understand why you would feel like you want to be weaned off the medication. I know that I would not have been able to recover from PP without it, but I did find some of the side effects and how groggy it made me difficult to deal with at times. It is hard to feel like you are not yourself, but the medication has really helped me and I have been able to slowly wean off it with the support of professionals.

I took it with lithium for the 18 months after PP, but then reduced to just a low doze of olanzipine of 5mg, then 2.5 mg every day and now I take 2.5mg every other day. My GP advised that I reduce it gradually, lowering the doze every couple of months and then reducing the frequency of taking the tablets over time. At one point a few months ago I did try to come off it completely without reducing it gradually, after reducing to one 2.5 mg tablet every other day. Due to the low doze I convinced myself I didn't need to take it any more but when I stopped all together, without continuing the gradual reductions as my GP advised, and I suffered a difficult period of anxiety and trouble sleeping for a few weeks and then I regretted coming off it in this way.

If you talk to your perinatal team or GP, depending on what stage in treatment you are at, I'm sure they can help you with your medication. I found mine to be supportive in listening to my feelings over dealing with the side effects of the medication and it finding the right balance to help my recovery.

I'm sure others who have taken olanzipine can offer more support and share their experiences.

biogulden profile image
biogulden in reply tovlk86

Thank you vlk. I reduced my dose to 3/4 of 5mg. I think that from all the posts about olanzapine I have to wean off it very slowly. Some people alternated the doses. My supervısor sad that you can wean off it in one go. But a lot of people suffer from cold turkey.

vlk86 profile image
vlk86 in reply tobiogulden

Hi biogulden,

I'm glad that mine and the other posts on the forum were helpful. I'm sure you will find what is right for you with the medication with your supervisors support. Weaning off olanzapine slowly has made me feel more confident and secure about my recovery and I have felt a noticeable reduction in the side effects every time. I know it can feel like a long journey recovering from PP, but you are making progress all the time.

biogulden profile image
biogulden in reply tovlk86

I want to ask you that did you lower your doze directly 5mg to 2.5 mg and than 2.5 mg every other day? Or did you alternate 5 mg and 2.5 mg ?

biogulden profile image
biogulden in reply tovlk86

I am also very scared about stories about olanzapine. I hope we can ged ride of this med safely.

Ellie_at_APP profile image
Ellie_at_APPPartner

Hi biolgulden

I'm sorry that you've been struggling coming off Olanzapine. Yes, I was on Olanzapine for about 12 months. I came off it very gradually, with advice from my psychiatrist, reducing my doses I think every month over quite a long period. I think I was reducing it over 6 months even. This really helped me. I have to say I didn't struggle with any side effects, and it also gave me confidence that I was well, and will be OK coming off it.

However, others I'm sure will have other stories, and I know some people have found it helpful just to stay on a low dose of anti psychotic, I think it's important we all do whatever works for us.

Take care, and I hope that you have all the support you need, never hesitate to ask more questions, or share experiences here. We are all here for you.

Ellie

biogulden profile image
biogulden in reply toEllie_at_APP

Did you alternnate the dozes? We planned to reduce the doze 5 to 2.5, 1.25 and 0.6 gradually? At which doze you come off it totally?

Thank you.

UF123 profile image
UF123

Hi biogulden,

I am also on 5mg now, tho I have been on 15mg for 2 years. The goal with my psychiatrist is to go down to 2.5mg for a month and then down to nothing the following month. I take this mainly for anxiety (off label) and it has worked soooo well for me the only thing is i went from 110lbs to 180lbs!!!! THAT is why i’m coming off of it, I have cried everyday because of the weight gain. Oh yes, you may find this helpful: this month having gone from 7.5mg to 5mg I have thrown up a few times and it’s just a little bit harder to sleep/go into deep sleep. That’s all my body can handle. So anyway hope my experience helps some... i’m not sure yet if my psychiatrist will have me alternate 2.5mg every other day but I hope not, as I’m eager just to get off this drug.

biogulden profile image
biogulden in reply toUF123

Hi UF123,

I reduced my doze to 3.75 and then I planned to reduce it 2.5, 1.25 and 0.6. I am afraid to reduce it 2.5 to nothing. Colud you please share your experiences when yu come off of it?

UF123 profile image
UF123 in reply tobiogulden

Yes, Definitely!

UF123 profile image
UF123 in reply tobiogulden

Hello Biogulden:) so i stopped taking it last night (I was on 2.5mg for about 2.5 weeks) and I actually feel fine so far. I do throw up from time to time but i’m not suffering. I’ll keep updating this thread since there doesn’t seem to be a lot of good info on this drug. I’ll let you know about my weight loss journey too. 💖

biogulden profile image
biogulden in reply toUF123

Thank you UF123. This is a good news. Iam on 3.0 mg now and still afraif of to decrease it.

UF123 profile image
UF123 in reply tobiogulden

Oh yes, I take tylenol pm and sleep just fine. Weird dreams, but I’m getting good sleep.

UF123 profile image
UF123 in reply tobiogulden

Hi Biogulden! just want to update you on my experience getting off this nasty drug. I had 2 nights of insomnia where I couldn’t fall asleep until 6am despite taking a ton of sleep meds. It was soooo agonizing! but i got sleep the last few nights, so i’m praying I will continue to. I am also dropping weight.. i’m doing a keto diet and it’s working way more being off the drug than when I was on it. My stomach bump is going away too. i’m gonna keep updating my progress because I think so many could use it. Whether it’s a negative or positive journey, I shall share in hopes it helps someone:)

biogulden profile image
biogulden in reply toUF123

Did you decrease 2.5 mg to nothing?

UF123 profile image
UF123 in reply tobiogulden

Yes:) And I sleep through the night now. Losing about 1lb everyday doing a strict keto diet (with no exercise.. at least not yet!).. feeling fab.. maybe there is so much more hope than what is posted on the internet. I’ll keep this thread up to date since i realize i am one of hundreds of thousands of guinea pigs...

Hannah_at_APP profile image
Hannah_at_APPAdministrator in reply toUF123

Hi UF123 & biogulden, it's good to hear that you have been able to share experiences of Olanzapine here, as well as the other responses and shared experiences here from forum users. I also took this medication after I had an episode of PP. I'm not sure if you are in the UK but hopefully you have good healthcare professional support and have been able to discuss your dosage and any fears/ side-effects with them too. Whilst it can be an individual experience, many people find that the gradual reductions work best, as also noted in the Choice & Medication website signposted below. When I stopped taking this medication, I also had a gradual tapering - whilst it felt like a slow process and I hated it at the time, I can now see that it was beneficial. I hope things continue to go well for you. If you've not seen it, APP also has information on medication and recovery in it's Insider Guides: app-network.org/what-is-pp/...

Take care, all the best, xx

biogulden profile image
biogulden in reply toUF123

thank you for your response

Jenny_at_APP profile image
Jenny_at_APPPartner

Hi biogulden

I hope you’re finding it helpful to read about other people’s experiences. I didn’t take Olanzapine so can’t share any personal experience with that medication, but weaned off the medication I took after my episode of PP (quetiapine) quite slowly under supervision.

I think it’s important to remember that everyone’s different and what works for one person might not work for another. Can you speak to your doctor about what might work best for you? I took a low dose of medication after having my second child (fortunately no PP that time) and was under the care of my GP. When weaning off that time I agreed a plan with my GP then was in email contact with her just to confirm when I’d dropped the dose and that I was feeling ok...

There’s some information about Olanzapine itself on the following website, and stopping suddenly isn’t recommended: choiceandmedication.org/ncm...

Wishing you all the best,

Jenny

biogulden profile image
biogulden in reply toJenny_at_APP

Thank you Jenny.

Pikorua profile image
PikoruaVolunteer

Hi biogulden,

I am pleased that mums could be of help.

Hope you will have the right professional support for trying to reduce Olanzapine.

Good luck and all in stepping stones

x

Hazello profile image
HazelloVolunteer

Hi biogulden,

It's really sensible to wean off the way you have suggested, in gradual steps. Fortunately you're not on too high a dose so hopefully won't take that long. I'm pretty sure when I weaned off (a while ago now!) I stayed at each dose for about a week before weaning down again. So you can kind of get back to an equilibrium with sleep and side effects before going down again. Watch out for symptoms returning and I think when I came off I was ready to go back up again if anxiety/ insomnia became too much.

I'm back on olanzapine short term prophylactically as I gave birth a month ago so I'll be doing all this again soon! My husband thinks i'm too drowsy during night feeds so he thinks I should go down from 5mg to 2.5mg but I remember the rebound insomnia (when you can't sleep without the meds) and while I'm already totally sleep deprived I don't want to make it worse and put myself at risk of psychosis again.

Let us know how you get on with weaning off, as others have said everyone is different but we can still learn from each other!

Hazello

biogulden profile image
biogulden

Hi Hazello

I have decreased 5mg to 3.75 last month and I am now on 3.75 mg. I have planned to decrease it to 3.0mg next month. I want to go slow.

biogulden profile image
biogulden

I also take 200mg L-theanin each day. I think it helps restore brain receptors.

NicJK profile image
NicJK in reply tobiogulden

Hi biogulden , just wondering if you managed to come off Olanzapine completely? Do you still have any withdrawal side effects?

UF123 profile image
UF123

Hi again Biogulden,

So I figured I’d chronical my experience since I’m coming off this. Last night I didn’t take it and I slept fine with no throwing up. The only thing is I took it for anxiety/social anxiety and i’m starting to feel symptoms coming back already. But it could be because I’m also a little bit manic (my mind races)... soooo.. I am going to try weight neutral geodon. Do you want me to tell you how that goes?

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