Difficult decision. What would you do?

[NicJK]

Hi everyone, I have been on a low dose of Olanzapine (5mg) for 6 months. I have tried lowering my dose a couple of times but I always get terrible insomnia which brings on anxiety. I am turning 35 this year and really want to try for baby number 2. My psychiatrist has assured me that being on Olanzapine during pregnancy is safe, so I have a decision to make. I can either stay on the Olanzapine for a while longer during my pregnancy or I can try once again to come off it, which will be a very long process and it will delay me falling pregnant for a long time. Which path would you take?

[Lilybeth Volunteer]

Hello NicJK

Good to hear from you. I think in your recent thread I apologised that I have no experience to share about Olanzapine. Did you find any helpful advice in the link to Bumps (Best use of medicines in pregnancy)?

It sounds as though you have a lot to weigh up, which can be stressful. I wonder if Postpartum Support International at postpartum.net might be helpful? On the site there are co-ordinators in different countries, one being Australia. Just a thought so that you can connect with other mums who might have had to make a similar choice. There will also be mums here to offer their advice.

Take very good care of yourself ...... stay safe.

[NicJK in reply to Lilybeth]

Hi Lilybeth , you always share very useful resources. Thanks very much! I did take a look at Bumps and the information supported what my psychiatrist has told me. I will also take a look at the other link you sent. I hope you are keeping well! Thanks again for your support.

[Lilybeth Volunteer in reply to NicJK]

Hi NicJK

Thank you so much for your kind words. I’m glad you found the replies helpful and in some way reassuring. I think PSI has been a good contact for mums outside the UK so I hope this might be another point for advice.

Always remember how amazing you are ...... we are all here across the miles Stay safe.

[coffeemom2]

I would stay on the drugs if it’s ok to while pregnant. I don’t have a medical background and I think it’s more of a medical decision though. From a mom perspective I would not want to fall ill again and would take every precaution.

I would have the second baby sooner rather than wait, but that’s because my two are 6.5 years apart and the older one was very resentful and lamented that she’s too young to play with. In terms of stress, I hear that having two very young ones at the same time is a lot of work. But I think it may be better for the kids? Again maybe I’m lamenting that my two don’t get along. The postpartum happened with baby #2 and not baby #1.

As for the age issue, since I’m older than you, you seem very young! From a medical perspective there are risks with increasing maternal age after 35, but there’s also individual differences too, and it’s pretty common nowadays to have babies around that time or a little later. Whatever works for you. Hope this helps you think about your decision!

[NicJK in reply to coffeemom2]

I really appreciate your very balanced advice! It is good to hear the experience of a mum that has children with a large age gap, but I’m sorry that your youngest has struggled. That is a difficult situation! I hope that she makes lots of friends so that you can have playdates. At the moment I am leading towards staying on the medication and falling pregnant sooner rather than later. Thanks for your very valuable input x

[Arabella-]

Hi I’ve had two out of three babies while taking Olanzapine so I’d continue taking it and have that baby! All my babies are fine x

[NicJK in reply to Arabella-]

Thanks so much for your reassurance Arabella- . I’m very glad to hear from a mum with first hand experience of taking Olanzapine while pregnant. I think you might have commented on one of my other posts too 😊. How long have you been on Olanzapine? It is working well for me but I am concerned about taking it long term.

[Arabella- in reply to NicJK]

I had PP after my first daughter was born 4 and a half years ago and swapped from Quietiapine to Olanzapine then. I’d say I’ve been on Olanzapine for 4 years. You can always come off it or swap it after you have finished your family. It’s better for your children to have a stable mother I always thought.

I have been fine but if I don’t eat I get a strange cramped feeling, an odd side effect. That could be Sertraline though as I take that too.

Anyway, I’m gradually coming down off Olanzapine now. I’m bipolar so I’ll probably always be on medication but it’s something I’m happy to do to maintain a stable home life for my family.

Please try not to worry, it’ll all work out fine whatever choice you make xx

[Ginny2018 in reply to Arabella-]

Hi

What was the reason you switched from Quetiapine to Olanzapine? Was it considered better in pregnancy?

I become very ill during pregnancy rather than afterwards and Quetiapine has been suggested by the perinatal psychiatrist should we go ahead with another pregnancy. I would need to start taking it from the very start as the symptoms kick in very early on.

The thought of taking medication during pregnancy-especially so early on-is worrying. We want to be as informed as we can be before making the final decision about a further pregnancy.

Any insight would be welcome.

[Arabella- in reply to Ginny2018]

Hi Ginny,

Quetiapine knocks you out about two hours after you take it, so that’s why you take it at night. It’s impractical to take it with a newborn as you need to be alert for night feeds.

I too did research. Basically, it’s unethical to deliberately test on pregnant women so there isn’t as much data as with non pregnant women. But there is a website (I’ve forgotten it) which informs the professionals so ask for it.

I would opt for Olanzapine in your shoes as it doesn’t knock you out.

Remember, thousands of women need to take medicine early on and are fine, so hope that eases your mind somewhat.

Hope that helps! X

[Hannah_at_APP Administrator in reply to Arabella-]

Hi Arabella & Ginny2018. Is the website you mention the best uses of medication in pregnancy (BUMPS) one? If so the link is medicinesinpregnancy.org/Me... Hope that helps

Other replies here signpost you to some APP resources about planning pregnancy and hopefully your local mental health team and others can advise about what will work for you, based on your wishes and history. I too have taken OIanzapine, both in treatment and ongoing recovery from PP after I had my eldest before I stopped taking it, with a reducing dose as I do not have any ongoing diagnosis. I also took it at a low dose after I had my youngest, for a short time, and was fortunate not to be unwell again. I also had it in my care plan to take in pregnancy if needed. I know that medication for mental health and pregnancy can be a difficult topic, but hopefully this is helpful for you to have shared experiences and other resources shared too.

All the best, xx

[Ginny2018 in reply to Hannah_at_APP]

Thank you so much for the website and info. I really appreciate you taking the time to reply. Although I get ill during pregnancy rather than afterwards, a lot of what gets discussed on here is really relevant to me too. Everyone’s story is different, but the support from this site makes me feel less alone-none of my friends have anything like it in their pregnancies (thank goodness!) so it’s hard for them to understand.

My local perinatal team’s usual policy is to only get involved in the second trimester-I don’t know if this is the same everywhere. We’ve had to push to get them involved from the start-it took a near suicide attempt for them to get involved before. But it does mean that neither they nor the general psych service seem to fully understand that mental illness can happen at anytime during pregnancy. They seem to assume that if there’s no mental illness outside of pregnancy then if it starts in the first 3 months, it can only be some form of anxiety or stress etc, despite me hallucinating, and having severe delusions etc-it’s like I’m taken over by a sinister presence with its own controlling voice. The diagnosis and recommendation of antipsychotics from prof Ian Jones has now made them willing to get involved from day 1- at least in my case.

It stands to reason that if they never see people in the first 3 months then they’ll never see others in my situation and therefore not have the experience to give appropriate advice. Everyone just gets sent to the general psych team until 3 months. It’s made the issue of medication feel a bit like a lottery in my case.

It has been really reassuring to hear that others have taken antipsychotics in pregnancy and been fine.

Thanks again.

[Ginny2018 in reply to Arabella-]

Thank you so much for taking the time to reply. I’ve got a preconception meeting with the perinatal psychiatrist in a couple of weeks, so will discuss Olanzapine with her as well.

It’s really helpful to get insight from people who have taken the medication already.

Thanks again x

[boat1 in reply to Arabella-]

If you have help for the baby then its fine to take quetiapine at night. I did like this for last two children

[Arabella- in reply to boat1]

Good on you. I didn’t have help x

[NicJK in reply to Arabella-]

Hi Arabella- I hope all is well with you! I'm still trying to make my decision about whether to stay on Olanzapine or not during pregnancy. I am leaning more towards staying on it, but interested to know - are you coming down off Olanzapine by dropping 2.5mg at a time? How much are you on now? My one issue is that Olanzapine makes me feel a bit flat and I'm worried that I won't feel as many emotions with my second child as I did with my first when I wasn't medicated

[Arabella- in reply to NicJK]

Hi Nic,

Happy Tuesday!

Personally I still feel lots of love and excitement with my children 😍

I have been lowering by 2.5mg but my psychiatrist says to keep on 10mg to stay well.

I hope this helps xx

[NicJK in reply to Arabella-]

Thank you! That does help. It is so lovely that you feel a full range of emotions towards your children. I think I might be imagining that Olanzapine is making me feel more flat, because I am a really anxious type and I tend to overthink things. Other mums on the same dose of Olanzapine have all said that they still feel all their emotions.

[Arabella- in reply to NicJK]

Hi Nic, I definitely felt flatter on a higher dose. But I found that when you give birth the love is stronger than the meds! 🥰 xx

[Maria_at_APP Moderator]

Hi NicJK,

Nice to hear from you, how are you doing? I am so sorry that you have to consider so many factors on planning for a second baby.

I am planning a second pregnancy at the moment, and despite having weaned off olanzapine, it was a really difficult decision for me to make. If you haven't seen them yet the app guide on planning a pregnancy at risk of pp has plenty of good info about it, and some testimonies from mums for whom pp thankfully did not repeat: app-network.org/what-is-pp/...

Some information is only relevant to the UK, but it still has some good insights.

In all this the most important thing is that you keep on feeling well, whatever decision you take.

Take good care and lots of love.

[NicJK in reply to Maria_at_APP]

Hi Maria_at_APP , lovely to hear from you too! I am doing quite well at the moment thank you. I hope you’re well. I appreciate you sharing the guide with me - I will definitely take a look. It’s nice to know that you are in the same situation as me, planning your second pregnancy. It is a very difficult decision isn’t it? Wishing you all the best x

[Bluebell24]

Hi I would stay on that 5mg dose , I take Olanzapine since I had PP in 2015 and relapsed last year on 2.5mg dose . I was very ill for 6 days and I’m now back on 5mg and doing great. Hope this helps in your decision making process

[NicJK in reply to Bluebell24]

Hi Bluebell24 , thanks so much for your advice. I’m sorry to hear that you went through a rough period but I’m so glad that you’re doing well now. Thank goodness! Have you had advice on the safety of staying on Olanzapine long term? I want to stay on it for as long as possible but I’m a bit concerned about the long term implications. It’s something I have to discuss with my psychiatrist but I thought I’d see if you have any info.

[Bluebell24 in reply to NicJK]

Hi I’ve been on it since 2015 and it is something I worry about but I’ve been reassured by the GP that there is no long term issue . Only issue for me is the weight gain but I’m tackling that and GP said it is a side effect so working on that . Main thing is I’m doing good . Hope this helps

[NicJK in reply to Bluebell24]

The weight gain is tricky isn’t it! But it’s worth it when it comes to us being stable. Thanks again for sharing your experience

[NicJK in reply to Bluebell24]

Hi Bluebell24 , I hope all is well for you! I have a question for you. Do you find that you have less emotions on your 5mg dose than you did when you were on 2.5mg? I have been battling with a lack of motivation towards my son recently and I’m wondering if it’s because of the Olanzapine. I could just be imagining it but I thought I’d see how you feel between the two different doses

[Bluebell24 in reply to NicJK]

Hi NicJK, all good here. Hope you doing ok . Definitely feel less motivated on 5mg but it’s more to do with how I’m feeling at work . I used to be buzzing and a busy bee with my work but now I’m more calm and measured. It’s the olanzapine and I guess it’s meant to calm us right down . I feel more tired and less motivated but I try to do lots of yoga on YouTube , mindfulness and word searches and that helps me get more motivated to do stuff. I hope this helps x

[AlexandraJay Volunteer]

Hello NicJK,

I would say go with your gut. What you feel to be right. I had pre natal depression when I was pregnant with my second child and took sertraline through the pregnancy and everything was fine. I do believe we are more susceptible to imbalances when we are pregnant/hormonal so would sway to staying on medication but it's entirely your choice. It is a very low dose of Olanzipine.

Also sorry you are in this predicament ❤️

Best wishes

Alexandra Hill

[NicJK in reply to AlexandraJay]

Hi Alrxandra, thanks so much for your valuable advice. I’m sorry that you went through pre-natal depression, that must have been so difficult. But I’m glad that you took care of yourself and stayed on Sertraline. Our mental health is so important as mums! Thanks again and wishing you all the best x

[AlexandraJay Volunteer in reply to NicJK]

Thank you, wishing you the best also ❤️ keep us updated how you go on 😊 xxx

[lillyofthevalley37]

Natural progesterone cream is very good fir insomnia you could try that alongside tapering off olanzapine

[Jenny_at_APP Partner]

Hi NicJK

I hope you’re ok. You’ve had some really helpful replies and shared experiences above

I had a second child after PP but wasn’t on medication when planning the pregnancy so have no experience to share sorry. I went onto a low dose of medication after the birth.

Whatever you decide will be the right decision for you and hopefully others’ experiences have been reassuring. Keeping you well is really important and you’re doing absolutely the right thing to make an informed decision. I wish you all the very best

Take care,

Jenny x

[Hazello Volunteer]

Hi NicJK,I was in a similar situation to you when we started planning our second pregnancy, i was on a sedating antidepressant though at the time. I was advised to be as well as possible when starting to try to conceive. This advice was very sensible however i then put myself under pressure to come off meds and to be "well" and i think that had the opposite effect! With time things did improve but only after i reached a point where I'd given up on being "well" and started to resign myself to needing medication in pregnancy. Though i did manage to stay off medication until the end of my pregnancy when i took alow dose of olanzapine.

My second is now 15m old and I'm still on a very very low dose of olanzapine which i was put on prophylactically. Fortunately this time i avoided psychosis. Like you I've really struggled to come off, with insomnia and anxiety. However I've realised that it actually makes sense that I'm anxious, the whole world is topsy turvy! We're in lockdown, my son isn't in nursery, ican't see any family and it's hard to see friends when it has to be outside and there's lots of snow and bad weather. So from my point of view, i can understand why you would want to stay on medication in pregnancy as the world is a pretty stressful place at the moment, and pregnancy tends to increase anxiety levels (well it does for me anyway).

I hope that whatever you decide, you feel comfortable with that decision and that it all goes well.

Best wishes,

Hazello

[Pikorua Volunteer]

Hello NicJK,

Wishing you well, loads of happiness! I am so pleased that you have received plenty of reassurance from those very experienced ladies who carried on with further pregnancies.

I have had PPP in 2010, but happy with one child only

From what I have been reading and deep down I feel that you are putting things into place in order to safeguard yourself on your journey for new personal growth and new life!

Sending you my kindest wishes. x