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Date: 10.01.2012
From: Katie

Subject: Methotrexate and pregnancy guidance

Hello!

My name's Katie, I'm 27 and I have had fairly mild RA for about 10 years now.

I have been on Methotrexate for about the past 7 years (with a short break at one point), and have been generally well controlled during the time I have taken it. However, I am now at the point where me and my husband would like to start thinking about trying for our first baby (ideally we'd start trying in July/August this year) and so I need to start thinking about stopping Methotrexate.

When I first spoke to my usual consultant about this, she recommended stopping the Methotrexate for 6 months before trying to get pregnant. However, when I next went to the hospital I was seen by a different consultant as mine was on a sabatical. The new consultant, who mentioned that she had worked in a hospital specialising in RA and pregnancy in Canada, said that she would recommend only stopping the Methotrexate 3 months prior to pregnancy, as this was adequate to allow the Methotrexate to leave the system and also put me at less risk of a flare.

Since seeing her, I have done a lot of internet research and am now more confused than ever! I have found a range of information about both 3 and 6 months being the recommended amount of time - so which is right?! I don't know whether the UK government is just playing it safe with the 6 month recommendation, as most of the 3 month information I can find is from elsewhere in the world, but it's hard to be sure.

Part of me thinks that it would be better to play it safe and have 6 months Methotrexate free before starting to try, as I'd never forgive myself if I got pregnant and something was wrong with the baby and I thought the Methotrexate was to blame. However, I'm also aware that it can take quite a while to conceive, and that if I wait 6 months before even starting I could easily end up spending a year or longer off the Methotrexate before falling pregnant.

I'm going to make another consultant appointment ASAP, as if I am going to wait 6 months I would like to come off the Methotrexate soon, but I want to feel like I'm armed with evidence/ideas before I go - otherwise I tend to get a bit overwhelmed and just agree to whatever I'm told to do without even thinking about it!

If anyone has any experiences to do with Methotrexate and pregnancy I would love to hear them, or just any advice. I guess I just feel really alone in this decision, especially as I haven't told many people that we're planning to try for a baby as I don't want everyone to be waiting for the announcement just incase it takes a while to happen! My husband is being really supportive, but I think he's even more scared than I am about making the wrong decision and is also very aware that it's my body and my health and not his.

Hope to hear from some of you soon,

Katie x
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Date: 11.01.2012
From: davina

Subject: Re: Methotrexate and pregnancy guidance

hi katie hope your well, methotrexate is a really horrible drug, i am also going to be stopping it this year to have a baby, at the moment i'm starting cimiza so i said i would try this for 6 months before i decide when to come off methotrexate but i'm going to come off it for 4 months ish, between the 6-4 months. my ra is not well controlled and i need to try another med 1st.

i really hope someone can help you with more advice and tell you what they did. x
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Date: 11.01.2012
From: Katie

Subject: Re: Methotrexate and pregnancy guidance

Thanks for your reply Davina,it's nice to hear from someone in a similar situation.

I really do hate Methotrexate,and can't wait to stop taking it if only so that I don't feel horrendously sick for 2 or 3 days every week (although I guess that could just be replaced with morning sickness!). I've started injecting it to try and stop the sickness,but it's no better :(

I've made an appointment today with my consultant for the end of next week,so hoping she'll be able to make things clearer for me,although I think I'm starting to err towards the 6 months anyway just to be safe. I guess I can always see how things go,and make a decision as time goes on.

I hope everything goes well for you - it's a pretty scary but exciting time isn't it?!

Katie x
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Date: 12.01.2012
From: davina

Subject: Re: Methotrexate and pregnancy guidance

hi katie i can't wait to stop meth as i know its a means to a new chapter in my life but know its going to be a while.
for you tho being your 1st is so much more magical and exciting. at least for the six months your have no sickness which would be good.
the only thing for me is dealing with the pain after coming of my meds, i am scared!!!
but like i said it means i'll have a new baby and i know this will proberly be the last 1 for me as my ra is bad and not controled, heres hoping for cimiza.

i really hope your consultant is helpful and understanding to your needs, as mine is a 60 yr old male doctor whom just wants the ra controlled. xxx
take care, let me know what happens xx
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Date: 15.01.2012
From: louloubelle

Subject: Re: Methotrexate and pregnancy guidance

Hey Ladies

I had a baby last year but wasn't on mtx. I had been using enbrel which, although the recommendation is to stop 6 months before conception my rheumy advised to stay on it until I fell pregnant. He put me on sulfasalazine as soon as I told him I wanted to start trying for a baby, you are able to take this during pregnancy so he put me on it nice and early so that it was in my system by the time I started trying.

If I was on mtx I would personally chose to leave it 6 months before trying - I wouldn't dare to risk it. Having said that, I had the misfortune of having breast cancer during pregnancy and had two rounds of chemo towards the end of hte pregnancy and, despite being delivered 5 weeks early, Oscar is absolutely 100% ok so the placenta does a cracking job of protecting the baby from any nasties.

Good luck girls
Lou xxx
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Date: 27.10.2012
From: Tabitha

Subject: Re: Methotrexate and pregnancy guidance

Hi Katie,
I am also 27 and in the same boat as you although I have only had RA for three years. I have been told I need three Methotrexate clear months by my Consultant and my GP. This is also what I have read on the NRAS and Arthritis Research websites. I feel the same as you that the Internet confuses things as you do read 6 months a lot. I really wish they gave clearer more uniform guidelines.

I am going to go with three months as this is the medical advice I have received. I was actually wondering how long is three months? I know sounds like a silly question! Is it 12 weeks (84 days) or more like 90 days taking an average of 30 days in a month?

I have been off Methotrexate for two months now and have just started to get swollen, painful joints again. I also used to be on Sulfasalazine and Plaquenil but I stopped these too as I really want a drug free pregnancy. Having said that I have just had to get Steroids for this last month before we start trying so I can carry on working despite the pain. I will stop it when we start trying. I know I will probably have to compromise at some point as I know it's important for me to be well (or as we'll as I can be) during pregnancy.

Like you I would also like to hear people's experiences and if three months is long enough. I agree I would not want to do anything to harm the baby but six months is a long time to be in pain and is not the advice I personally have been given.

Have you seen this website? http://www.otispregnancy.org/methotrexate-and-pregnancy-p150081

I found it interesting.

I see that your post was in Janary. How are you getting on? I guess you may have had six months Methotrexate free by now? Hope all is going well. Xx
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Date: 01.11.2012
From: davina

Subject: Re: Methotrexate and pregnancy guidance

tabitha i would go by the 6 months as my futility specialist says and my gp. lots do say 3 months but there is no insurance so if you don't want to take a risk i would wait 6 months.
i have now been off medications since feb this year and its very hard and painful. i am on steroids 15mg (doctors will not give me anymore due to having 6 joint injections and a steroid infusion which didn't work for me)
zomorth for evening and oramorph during the day when i need it.
doctor as refured me to pain clinic to help.

i can tell you its not good and not being on steroids during the beginning of your pregnancy will be extreamly hard until (hopefully) your natural hormones take over.
i hope all goes well and you choose the best for you. x
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