Olanzipine withdrawal

[Olazapine1]

Hi, I'm currently taking 2.5mg of Olanzipine in addition to citalopram, lorazepam and propanalol for anxiety and depression. I haven't had PPP but I did have very bad PND and spent some time in hospital. That was 14 years ago now though. Anyway I hate taking the olanzipine, I'm so scared of the side effects, particularly the risk of tardive dyskinesia. I have put on weight too. I'm scaring myself silly googling about all the withdrawal problems. I've only ever taken 3.75mg but have reduced to 2.5mg 3 weeks ago. Now I am experiencing increased anxiety and feel like I want to put the dose up again. I'm so worried about what to do for the best. Does anyone have any experience of coming off olanzipine? Thank you.

[alisonrw Volunteer]

Dear Olanzapine1

Thank you for getting in touch on the forum. I'm sorry to hear that you're feeling anxious when trying to reduce Olanzapine. I understand how you feel as I have also been prescribed this medication and have had difficult experiences weaning off it.

I'm not able to give advice about medication but I can share my experiences of tapering off. Like you I have struggled with my mental health for several years. I have taken Olanzapine, alongside other medications, at various times over the past ten years for episodes of psychosis outside childbirth and also took it for 12 weeks after the birth of my son recently, due to being more vulnerable to PP.

I have had some experiences of tapering that went better than others. Each time I have tapered off I have felt more anxious, I believe that this is because Olanzapine makes me feel sleepy and dulls sensations for me so everyday sensations returning can feel overwhelming. Sometimes I have also returned to a higher dose and tried to reduce at another time.

I think key things that helped during the times when tapering went better included being in regular contact with my GP. Trying to start the taper at a more quiet time in life, I know this isn't easy with children and family to care for. I found tapering easier at times when I was out of work or was able to take annual leave around the times I was reducing doses if I needed to. I found moving to a lower dose on a Monday or earlier in the week if I could choose the day was better for me, as this meant that my GP would be more easily available if I was struggling or needed any medication adjustments. I knew I could access healthcare professionals over the weekend, but it generally seemed easier to access people during the week. I also tried to avoid going to a lower dose around any holidays or if I knew I was going to be away from home. I found this a struggle at times, as its hard to put life on hold and I often had things planned in advance, but I tried to do this when I could.

I also put on weight when taking Olanzapine and did become less hungry when I started weaning off. Are you eating enough throughout the day? I found it difficult to eat when I was anxious, but I feel that being hungry would make me feel more anxious so tried to eat even if I didn't feel like it. More recently I also tried to avoid actively trying to loose the weight I gained or dieting and try to eat a balance of foods. I have found that my weight has tended to reduce slowly over time by itself.

Are you in touch with your GP? They may be able to give specific advice on how to taper and review your other medications to adjust the balance of those whilst you are coming off Olanzapine. They will also be able to check in with you to see how you are going during this process.

Please keep in touch and ask if you have any questions. There are lots of people here that have experience of reducing Olanzapine and do take a look around the forum as there are posts where others have shared their experiences of this too. All the best of luck and take care.

Best wishes

Alison.

[Olazapine1 in reply to alisonrw]

Hi AlisonThank you so much for your helpful reply. I am reducing the olanzipine under guidance from my psychiatrist, but to be honest I think he sees it as a simple case of just reducing then stopping. I saw him last week and said that my anxiety had increased and mood dropped and asked did he think it was reducing the olanzipine, but he said the reduction was too long ago to be having an effect now (I went from 3.25mg to 2.5mg). I'm not so sure. He wants me to increase my citaloram from 35mg to 40mg, and has also said I can use extra lorazepam if I have more anxiety from increasing the citalopram. I'm so fed up with all the pills. I just want to be back where I've been for the last 20 years or so, which is just taking an antidepressants and none of the other stuff (not including when I was pregnant/postnatal, I took tranquilisers then too)

Can I ask how long you felt anxious for when you were tapering? I don't know how long to give it before I cave in and go back up a little bit.

ThNk you again for your lovely thoughtful reply

Sarah

[alisonrw Volunteer in reply to Olazapine1]

Hi Sarah

That's great that you have the support and guidance of your psychiatrist through this process. I do feel that lowering the dose affected me for a while and I needed to take care for some weeks after stopping completely. So I understand why you feel unsure of him questioning this.

I feel medications are a personal thing and impact different people differently. I'm sorry I'm not able to give a specific time in terms of how long I felt anxious when tapering. Each time I've stopped taking this medication I've had different life circumstances and different combinations of medication so I can't really say. I think I've felt less anxious if I've been able to sleep well. I also feel that it wouldn't be possible to completely get rid of anxiety and have learnt relaxation techniques to try to take my mind off things, also trying to get as much sleep as possible and doing things I enjoy helped.

If you're feeling that anxiety is at unbearable levels, speaking with your psychiatrist about taking a break from tapering and trying reduce at another time could be a kind thing to do for yourself. Could your psychiatrist be querying the effects you're experiencing now as he is wondering about other factors playing a role? I suffer from very bad PMS and I feel more anxious in the second half of my cycle so I keep track of this as it explains some of these feelings too. If you think hormones could be playing a role, there are mood and period tracking apps available that could help to keep a note of this side of things. There are some threads on the forum about PMS and menopause and perinatal mental health, which I'm not sure will be relevant as I don't know what stage you are in life, but might be worth taking a look at too.

You're doing the right thing reaching out and looking for information. We are happy to offer support here, if there's anything you'd like to ask about please write. These things take time and I feel going slowly can lead to more progress in the long run.

Best wishes

Alison.

[Twobabies Volunteer]

Hello, glad you found the forum. Sorry to hear you’ve had a horrible time with PND and anxiety. I had ppp in 2018 and was also hospitalised for treatment. I was on a max dose of olazapine while in hospital and weaned off extremely slowly once home.By a year of being on it I was ready to come off and with the support and agreement of medical team looking after my care my dose was lowered every few months so I could come off it completely. I felt the side effects of being drowsy and weight gain impact me while on it so when I felt better I was looking forward to getting off it. I can’t recall my steps down in terms of dosage but I had no adverse side effects at all. I did stay on my antidepressant/ anti anxiety medicine much longer though and the medical team only wanted for me to focus on coming off one med at a time. Sounds like that googling caused you lots of anxiety and perhaps it’s hard to tell if it’s a side effect of reducing dose the drug or that the Googling / fear thats adding to anxiety? One to discuss with your mh team too. I’m living prove that it is possible to get off this drug without bad side effects but everyone is different and how you feel is the most important thing. Recovery is always a journey and no rush required. Sending you lots of love and hope whatever you and team decide is best for you right now you feel supported and its right for you. Best wishes Xx

[Olazapine1 in reply to Twobabies]

Thank you for replying, that's great that you managed to come off the olanzipine with no issues. I'm feeling really anxious this morning, had to take some extra lorazepam already. I have emailed my psychiatrist about increasing back up slightly with the olanzipine, I can't stay like this. Hopefully he will reply tomorrow. You are right that googling isn't helping, although finding this forum has been fantastic. Thank you again for your kind words of support. It's all so tough isn't it? Xx

[Twobabies Volunteer in reply to Olazapine1]

Hello, It is so tough, and I’m so glad you found the forum. Sounds good action to email the psychiatrist again, take your time and what feels best for you, important it’s all right pace for you and no rush. Anxiety is horrible. Are you getting any other talking therapy / psychological support? I speak to a therapist weekly and have done for years now since my episode she gave me a good rate as it is weekly and was open to different rates depending on circumstances. I also find trying to focus on my breath helps, in for 4 out for 6 as i can easily forget to breath well if really anxious. You are not alone and different people on here will have found different things to help. Is there anything you find helps you if you feel less anxious? Big hugs xxx

[Olazapine1 in reply to Twobabies]

Hi, I'm not currently having any counselling, although I have in the past. I think I'm using strategies quite well, breathing, Mindfulness, distraction etc, but it's still very uncomfortable feeling like this. Just not completely 'me'. I know that I am so much better than I was 6 months ago, but I just wish I could feel well all the time, it seems to be 2 steps forward and 1 backwards. As an update, I heard from my psychiatrist and he suggested increasing the olanzipine again. He suggested back up to 3.75mg (1 and a half pills) but actually my last step was 1 and a quarter pills so maybe I'll try that first? Thanks for taking the time to reply. Sarah x

[Olazapine1]

Me again. So I've increased to 3.1mg for the past 2 nights, but I'm not sure whether I should just go back up to 3.75mg tonight? I just need this anxiety and low mood to go away. I have been looking over my diary and I think it took about 5 or 6 days to see an improvement when I started on the olanzipine, and a similar amount of time when I tried to come off it before and had to go back up. But I did that too quickly then, and thought I was being much more cautious this time by reducing to 3.1mg for 2 weeks then 2.5mg. It looks like it will take months, if I can even come off them at all. I'm so upset with all this, and angry that my psychiatrist even started me on these. I'm a mess, and I hate it. I hate myself and I'm stuck going round in circles just trying to get well again.

[Keziah8 Volunteer]

Hi Olazapine1 Reading your post takes me back to when I had PND (after PPP). I was reducing Olanzapine, had lorazepam for if and when needed and eventually citalopram too (other anti/depressants didn’t help).

I felt so abnormal constantly and then would have extreme anxiety in particular situations (usually social settings).

It all went away though once I completely stopped Olanzapine and lorazepam. (I stayed on Citalopram even until now)

I know it’s really hard and strange right now but I’m sure if you follow the steps that the doctor recommends then once you are down to zero Olanzapine then you will be back your normal self. Like alisonrw said, everyone has their own personal experience. But I hope it helps to hear others experience and get reassurance that everything gets better in the end. You will eventually be at a place that you are happy with. All the best x

[Olazapine1 in reply to Keziah8]

Thank you so much for replying. It is really helpful to know other people got through this. I think it's having struggled twice now to reduce my dose I can't see myself ever coming off olanzipine. But I know that isn't a helpful way to think. I do try very hard to stay positive (particularly in front of my son, who is 13 now). But it's exhausting. Do you remember how long you took coming off the olanzipine? Although everyone is different as you say. My psychiatrist says I must be very sensitive to meds. He's not very sympathetic! Thank you again for taking the time to write, it helps a lot to know there are some other people out there who have similar experiences. Sarah xx

[Keziah8 Volunteer]

Hi Sarah,

Thanks for your reply. I came off Olanzapine after 6 months, although the doctors recommended upto 12 months. It was my career at the time that pushed it to be faster. I know many people vary in the length of time they take it depending on their individual treatment plan. For sure, some people take it for years rather than months. Just like anything really…everyone has different recovery times. But the fact is, a full recovery is possible. The journey is hard, but you will reach the place you are aiming for. In the timing that is right for you ❤️

[alisonrw Volunteer]

Hi Sarah

I wanted to check in with you as you were struggling with anxiety related to adjusting olanzapine dose a few weeks ago. Are you doing OK? I hope you are finding some relief and the process is going OK. I read your last messages and it’s OK if this takes time, you’ll get there.

Sending you good wishes.

Take care,

Alison.

[Olazapine1 in reply to alisonrw]

Hi, thank you so much for checking in. I decided to increase my dose back up to where it was for now as I couldn't cope with the anxiety. I was also increasing my citalopram slightly so that increased the anxiety a bit too. I am going to stay at this dose now for a while, and then try and reduce in a couple of months. I'm feeling so much better, I'm trying not to think about how hard coming off this medication may be..

[alisonrw Volunteer in reply to Olazapine1]

I'm so pleased to hear from you and that you're feeling better. It takes a lot of courage and self awareness to change a plan if things are becoming too much of a struggle. That sounds a good idea to focus on the present. I believe that you'll get to where you'd like to be over time. Wishing you all the best - keep in touch and write again if you feel it would help anytime.

Take care

Alison.

[Olazapine1]

So I'm just updating my post as I'm trying again to reduce my olanzapine. I'm actually on 2.5mg now and have been for about 6 weeks as I had to go into hospital for a bit and they couldn't split the pills like I had been doing. So I'm going to try and reduce from 2.5mg over the next 6 weeks - I want to try and be off it by Christmas. I'm also in the middle of withdrawing from citalopram and switching to sertraline, so it's a double whammy! I have clonazepam to help with any increased anxiety, so hopefully it will go smoothly this time.

[Maria_at_APP Moderator]

Hi Olanzapine1,

Thank you for your update, it is a worry when we go through a change in medication, isn't it? A good weaning plan formulated with the help of my psychiatrist helped me a lot, and also keeping it flexible, we are all so unique in our own chemistry. I struggle to come off anti-depressants, for example, and it takes me more than one try to wean off it and that's OK. All the best in your journey, take good care.