Olanzipine - will I ever be able to stop taking it?

[SameKeyThough]

Hi, I'm so worried about being on Olanzipine and scaring myself with stories on the Internet about it being impossible to stop. Does anyone have any experience of taking it and coming off it?
I have suffered from depression my whole life and taken antidepressants since I was 19 (49 now). That didn't bother me really , I've accepted that's just how I am. I am able to function well and happily on just Citalopram. Until I wasnt. I had a big relapse 5 months ago, very severe anxiety and panic, increasing my citalopram did nothing, taking lorazapam helped. I was able to use my husbands health insurance to get private psychiatric inpatient treatment, where the psychiatrist suggested a low dose (2.5mg) of an anti psychotic, Olanzipine. I resisted for a while as I had googled and read so many negative reports, but then after months of no improvement I agreed to try it. It was almost immediately helpful, and I felt back to myself finally. After a few really good weeks, my psychiatrist and I thought I could try weaning off it as my citalopram may also have been contributing to me feeling so good, and he didn't want to keep me on olanzipine too long. So I reduced really slowly, 0.8mg every 5 days but after about 10 days my mood went down and down and my anxiety increased. So now I am increasing the olanzipine again, desperate to get back to where i was before.. I'm so scared that I'm stuck on it forever and I'll end up with terrible side effects like diabetes and facial tics, or psychotic behaviours. Please please if anyone has any knowledge. I've read every previous mumsnet post but anything else???

Anyone? Please...

I had postnatal psychosis and was put on 5mg of olanzipine which made me like an absolute zombie, coming off it actually made me feel tons better! Wishing u lots of luck x

Thank you for replying. Did you take it for long?

I managed to stop a much higher dose of olanzipine but mine was for bipolar I believe I was 20mg for over a year though I changed tablets I’m not sure if it’s the same for such a small dose but I’d put on 4 stone in the first 3 months and without any dieting the first stone dropped off within a month. Sleep was my biggest issue when stopping but was prescribed a month of zoplicone to help it really is possible to come off though I think I actually went down the doses quicker then I was told to this was 5 years ago. Be kind to yourself and I’d say stop googling and I’d want to have another antidepressant to be starting on low dose if you really want off of it but going back to the depression and also if not being able to sleeps a problem ask for some sleepers till your off it in small amounts they just can reset your sleep hth it’s hard I know but definitely possible.

@Hm2020 thank you, that's good to know that you came off it. I have put on about 8 pounds which isnt too much I know but I had managed to lose weight and get quite fit over the past year so it's a but upsetting to be going back up. I am also on citalopram, so hopefully that will help with the anxiety and depression, although the psychiatrist has just increased my dose which isn't helping I don't think. I have lorazepam which I'm trying to use very sparingly (0.5/0.75mg per day). Thank you for taking the time to answer.

Bit different but I was on citalopram and quetiapine for about 2 years, weaned off both and been without for 5 years now. I had a lot of therapy before coming off though and it was difficult.

I took it after leaving inpatient for a stress / anxiety induced acute psychotic episode. I was on Ariprizole during inpatient and a short while after (c. 2 months total) which was horrific for side effects; and so when I had recovered enough to finally speak out for myself and say no I will not take that - they switched me to Olanzapine.

Like you it was effective almost immediately and I thought a good minimal side effect balanced drug that didnt make me too drowsy, too knocked out or too on edge.

Every week I would go back and say yes its great, its a good match and am happy with it - they would try to increase the mg again. I think I was on 10mg and they were trying to increase to 15 (after 6 weeks of slow increases) when I just said 'forget it, I feel fine, am happy, am no longer psychotic and your just not listening to me'. I lost complete trust in the psychiatrist and stopped that day cold turkey. I had no issues. Now many a year later.

@PiccoloMaud that's good to hear that you came off both. I have no problem staying on the citalopram, it's just the thought of taking an anti psychotic when I have never had any psychosis that scares me. Can I ask why you were prescribed quetiapine in the first place? That was also an option for me.
@LemonSwan I'm afraid I share your cynicism. I have been through both NHS and private psychiatric services and don't rate either. At least the private psychiatrist does listen to me though. NHS mental health services have been patchy to say the least.

Thank you both for sharing your experiences.

@dane8 I think there is a big hormonal element yes. I also had very bad pre/post natal depression requiring inpatient treatment. At the start of this last episode I did actually start hrt, but then became very worried about the progesterone part in case that made things worse. I have gone from being on one one medication (citalopram) for the past 10 years or so, to being on 4. I don't think I can face adding HRt into the equation at the moment

Agree very patchy, but I do have to say I did and still do rate Olanzapine, and if I ever need another psych med it would be my first choice. I also had it with Lorezapam and it was a really great mix.

If its working for you stay on it and enjoy it working well. Please dont worry about the withdrawals because it may not happen (especially with such a small dose!) - it never did with me on a much greater dosage.

Thank you, I've had 2 good days in a row and feel more like my old self, so hoping that lasts. I'm trying not to think about the Olanzipine too much. Hard though, because I really don't want to be on it.

Just bumping in case anyone else has an experience of olanzipine- I'm getting really obsessed with the thought of developing tardive dyskinesia as a side effect. I can't stop googling and I know that's not a good idea. Ironically I feel much better other than this constant worry at the back of my mind.

@SameKeyThough did you stay on it? I've just been prescribed it and have the same obsessive worry about TD. Don't know what to do.

Hi, yes I'm still on it. Have reduced to 2.5mg though, as I was in hospital and the pharmacy there couldn't cut the pills. I have added mirtazipine too my long list of drugs, so whether taking that helped with the drop in olanzapine I'm not sure. I'm hoping that if I manage to get stable enough on the mirtazapine I can reduce the olanzapine again. Its all such a minefield, just wish I wasn't taking any of it to be honest.

Just updating my thread - am starting to slowly reduce my olanzapine on the advice of my psychiatrist, mostly I think because I am on so many drugs and it doesn't seem to be doing much! I've just reduced to three-quarters of a 2.5mg pill, and am planning on reducing by a quarter every 2/3 weeks. So fingers crossed 🤞!

Hi I have been on olanzapine for several years along with fluoxetine after having quite a severe episode of psychosis and being diagnosed with psychotic depression.

I'm on 5mg a day now and 20mg fluoxetine, think they want me to stay on it now. I have regularly yearly blood tests for things like blood sugar and cholesterol.

They have reassured me it is a pretty low dose and one of the things I was told was to 'eat smart' on it to reduce the risk of metabolic problems such as diabetes.

My blood sugars have always been OK. I try and eat healthily and exercise but did put on weight. I used to have it with mirtazapine but that combinatin made me very sleepy. Fluoxetine less so.

Little thread update. Reduced olanzapine to 1.25mg now, been on that for about 10 days. Have also been withdrawing from citalopram and switching to sertraline, so it's been a bit of a rollercoaster. Not feeling too stable on the sertraline yet so will leave my next olanzapine drop for a bit longer.

Hi Samekeythough
Have you stopped Olanzapine completely now ? I'm taking 2.5 with Sertraline for 6 weeks now. I have dizziness daily but my blood pressure is fine. Did you get that at all ?

Yes stopped it completely. Don't think I had olanzapine related dizziness, I have low blood pressure and dizziness but that is because of the beta blockers I take for anxiety. Withdrawing from mirtazapine now, done diazepam! Beta blockers after mirtazapine hopefully!

Sounds like you're doing well. Did you try pregablin for anxiety ? Its a nightmare isn't it.

@Weym2023 yes I'm on pregabalin. It was by far the most effective med for my anxiety. Also HRT!

Sounds like they are working for you. Its the dizziness i'm finding hard. It's 6 weeks on Olanzapine so i don't think it will go.

@SameKeyThough sounds like you have done so well to get to this point
How long did you spend as an inpatient - did you find it helpful in your overall recovery ? I don't have the insurance to cover the cost but I've often wondered if it could make a real difference