Tocilizumab and pregnancy

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Sammy123
Sammy123 Member Posts: 3
edited 28. Nov 2016, 05:23 in Living with Arthritis archive
Hi all,

I'm new to this forum but have had RA for 16 years (I'm now 33). After working my way through various drugs I am now on Tocilizumab.

I would like to know if anyone has any experience of pregnancy and Tocilizumab. The guidelines are currently to stop it for three months prior to conception-this isn't an option for me as my disease is too active without it. Has anyone had a healthy pregnancy and baby while taking Tocilizumab until conception? Or has anyone stopped it for less than three months before trying?

Thanks in advance.
Sam

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi
    Welcome to the Forum - I'm sure you will find the answer you seek here,if we can help in any way just ask.
    Mod Al
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Hello Sam and welcome to the forum.

    We regularly get enquiries about pregnancy/arthritis/medication and the difficulties of coming off the meds in order to try to conceive. However I don't recall anyone actually chancing it with the meds. You can have a look at former threads by putting 'pregnancy' into the search engine above.

    Of course it's not just the getting pregnant. I flared very badly after both my pregnancies and without a huge input from my husband and parents, haven't a clue how I'd have managed as the meds which helped pre pregnancy did nothing for me post pregnancy either time. It's a lottery.

    I hope you will cope. The difficulties pre-pregnancy are, however, a good preparatiom for what comes next.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
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    Hi Sam

    Have you spoken with your rheumatology team about this? Currently the research and knowledge regarding biologics and pregnancy is too new for there to be any real understanding regarding the impacts of the drug on a human fetus. It will take a long time for the evidence body to develop because there cannot ethically be controlled testing on a human fetus and just because animal testing hasn't showed an increased risk doesn't mean there isn't one or even long term developmental impacts which cannot be assessed or formally attributed. That really is something to consider because as much as you think you know how you feel about it now, if you did become pregnant you may find that your emotions change. I certainly was unprepared for how important my little ones are to me and as cliched as it may sound your whole outlook does change, your guilt also changes and anything you can do to keep your babies safe, you endeavour to do.

    I had to withdraw from mtx for three months before I got pregnant. It was very hard and my rheumatology team were very helpful and supportive and kept the supply of steroids coming. The outcome was good and I ended up with twins who will be three in a couple of weeks. Following my pregnancy, and this could be totally coincidental, my arthritis has been much more severe and I'm now on anti-tnfs along with two DMARDs. That's something to bear in mind because, like SW states, it isn't easy being arthritic with small children and you need a lot of support at times. It doesn't make it impossible or stop it being amazing and lovely but it does add some hurdles to what is already one of the harder things in life.


    Good luck, I really hope you can find a way to handle this dilemma and find a way to becoming a Mum.
    LV
    Hey little fighter, things will get brighter
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Arthritis and children have one thing in common: neither come with an off switch. This decision must be so hard for women of your age and younger, you are used to the meds doing what they need to do, but as LV says, there is no evidence about the impact on the foetus and surely that has to be your first concern.

    I know I made the right choice for me by not having children but I benefited from better-informed medical knowledge albeit waaaay back in 1975 when I was 16. My parents hadn't a clue what they were passing on (because they were healthy) but ye gods they did it properly! :lol:

    I think it boils down to one thing: what do you want the most? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • merri
    merri Member Posts: 190
    edited 30. Nov -1, 00:00
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    I know that the guidelines say to refrain from Toc for at least 3 months before trying to conceive, if you're taking Methatrexate then it's another 3 months on top. It's a subject close to my heart as before having RA and other diseases, I always expected to have a child before now.

    One of the nurses involved in my care have advised me previously that for some people their RA improves and goes into remission, for others it flares and worsens, it's just the luck of the draw.
    I'm the same age as you, and one question which may be relevant, what is your disease activity like currently? I can't remember which drugs are pregnancy safe, but have you had the discussion with your Rheumatology team? They would be able to advise which medications are "safe" for use during pregnancy, but it is worth pointing out that a lot of the pain relieving medication is not to be taken during pregnancy. I do hope that you and your RA team can find a way for you to achieve your goal :) x
  • scouting
    scouting Member Posts: 37
    edited 30. Nov -1, 00:00
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    Hi
    I got pregnant whilst on sulpasalasine and I think another drug (been a while ago) not one was I advised that there might be an issue. My child was born healthy it was just one of those things. As most have said it's the afterwards. I am now the worst I have ever been and about to try my second biologic. It's been a rough ride. I push myself to keep up with a four year old and run around after her and I get all the colds from nursery. But I wouldn't change her for the world.
    Gxx
  • merri
    merri Member Posts: 190
    edited 30. Nov -1, 00:00
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    It's lovely to hear that you have a little one :)

    Sulfasalazine is a disease modification drug (dmard) and I know that with some of the DMARDs you can stay on them during pregnancy if you must. With Toc, as its an IL 6 inhibitor, it works differently and that may be why it's contraindicated with pregnancy. I know I was told it was a definite no no . At the end of the day though, best to have a chat with your consultant and see what they say :)
  • Sammy123
    Sammy123 Member Posts: 3
    edited 30. Nov -1, 00:00
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    Thank you all for your replies.

    My RA is under control at the moment and I have chatted with my rheumatology team about pregnancy. They quoted the guidelines of waiting for three months. But they also said there is more and more evidence coming out that some Biologics are safe during early pregnancy. This is why I was curious to find out if people had fallen pregnant on Tocilizumab.
  • Eldeming
    Eldeming Member Posts: 1
    edited 30. Nov -1, 00:00
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    Sammy123 wrote:
    Thank you all for your replies.

    My RA is under control at the moment and I have chatted with my rheumatology team about pregnancy. They quoted the guidelines of waiting for three months. But they also said there is more and more evidence coming out that some Biologics are safe during early pregnancy. This is why I was curious to find out if people had fallen pregnant on Tocilizumab.

    Sammy, have you had any more luck in finding your info. I fall into the same exact boat as you. Any help would be appreciated.