Wanting to start a family

[Durrell]

I’m not asking for myself but I do have a young friend also has RA, she & her partner would really like to have a baby. Her biggest concern is coming off MTX prior to the pregnancy. I just thought I’d ask here as I know there are young mums here & id be very interested to know how you got on, prior to becoming pregnant off the meds & whilst carrying. Any experiences & thoughts shared would be greatly appreciated. She has discussed this with her consultant, who can advise but actually gaining & sharing knowledge with people who have gone through this would be really informative & beneficial first hand. Many thanks.

[Madmusiclover]

no direct experience but NRAS helpline might be able to put her in touch with other Mums who have been through similar.

[Durrell in reply to Madmusiclover]

oh thank you so much that’s really helpful 🙏🏻

[Hidden in reply to Durrell]

Hiya, as said above, please do give the NRAS helpline a ring and they can point you in the right direction. They may also be able to put your friend in touch with a Volunteer who has had a similar experience.

[Durrell in reply to Hidden]

thank you Naomi I will pass all this lovely info to her, I think the helpline sounds a really good idea as previously mentioned..

[Hidden]

I was diagnosed with Adult Onset Stills Disease which manifests as RA aged 17. Drug free by mid 20s. Two easy pregnancies and births at 26 and 28. Symptoms were no worse during pregnancy and any knee and wrist pain or immobility as a result of joint damage was easily adapted to. I breast fed both babies for 6 months and they are now men in their mid 30s.

I’m now 60 and have grandchildren who know grandma needs a hand up after doing Lego on the floor 😀

[pauluk60 in reply to Hidden]

good on you stills brilliant to hear

[Neonkittie17 in reply to Hidden]

Well done for getting down to the floor for Lego! 👏🏻👏🏻👏🏻💗

[KittyJ]

I wasn’t on mtx when I got pregnant but I just wanted to say my RA vastly improved whilst pregnant and had no problems whilst carrying even though I’d stopped all my meds. I hope the same happens for your friend and she falls pregnant quickly. As for after the birth you learn to adapt quickly and, as she probably already does, find ways that make things easier for you, different ways of doing things. 🤞🏻

[pauluk60 in reply to KittyJ]

well you should always be preggars kitty

[Neonkittie17 in reply to pauluk60]

Imagining Kittyj’s horror at this thought! 😳🙀😁

[KittyJ in reply to pauluk60]

thanks Paul, getting a bit old now though 😂

[MJSlide1958 in reply to KittyJ]

Hi KittyJ

May I stay in touch with you because my daughter has had RA since 17 years and been on Enbrel from 2010 to now but has had to add 15mg MTX weekly tablets too. She is 30 now and is thinking of having a baby in the near future, but very worried about meds and how long to be off of, especially MTX! Grateful for any info you can give, which will be most helpful. Thanks

[KittyJ in reply to MJSlide1958]

I’m not sure I can be much help as my info will be out of date regarding what drugs are ok to take and the advice given while pregnant as it’s 26 years since I was last pregnant 😊 Your daughters rheumy will be able to let her know what’s Now recommended.

[MJSlide1958 in reply to KittyJ]

Thank you

[Durrell]

thanks Kitty, that’s really encouraging to hear 🙏🏻

[Loopy1999]

Hi. I came off my methotrexate a few years ago to have another child. It was hard whilst trying as obviously the pain is awful. I luckily fell pregnant quite quickly and went into remission from RA during pregnancy which was amazing. My daughter is now 11 in February 🙂

[Durrell in reply to Loopy1999]

oh thank you Loppy this is really helpful info & now a lovely 11 yr old, wonderful. Thank you for sharing your experience, greatly appreciate 🌸

[MJSlide1958 in reply to Loopy1999]

Hi Loopy1999,

Please may I have as much info from you too, very helpful because my daughter has had RA since 17 and now 30 and thinking of having a baby in the near future, but scared re meds, especially MTX weekly tablets, She is also on Enbrel weekly since 2010. It would be so appreciated on all your tips please. Thanks very much

[Hidden]

Somewhat unrelated but we do have a Parenting with IA group that meets online, this is a great way to meet fellow parents with RA and share the highs and lows. You can email the group on [e-mail] 😀

[Durrell in reply to Hidden]

that’s really helpful thank you..

[Whezziewhoozie]

HI,

I am of child bearing age so I never went on to methotrexate. I went for a biologic instead. I had to get my hospital to apply for special exemption and funding as care plans state yoh much try methotrexate before a biologic. There are quite a few biologics that are safe in pregnancy and can be taken throughout. Cimzia being one of them.Maybe that’s an option? . I have also been seen by the early planning pregnancy unit at my hospital who have tested my fertility etc. Now I am looped in with them if I were to get pregnant they would monitor me more closely. They were great in advising about vitamins etc too

[PP01]

Hi, I had my first child 6 months ago and was previously on MTX before getting pregnant. I came off the MTX 3 months before conceiving and switched to sulfasalazine which is safe to take in pregnancy. I did flare quite badly about 6 weeks after stopping the MTX and really struggled with the sulfasalazine side effects (the usual dose is 4 tablets a day, but I could only get up to 3 tablets and even that made me feel pretty rough). There are biologics that are also safe to take in pregnancy which would have been what we tried next but luckily I fell pregnant quickly, my arthritis went into remission and my body got used to the sulfasalazine. Since giving birth, I had some mild arthritis twinges about 8 weeks after but managed to increase the sulfasalazine and that has kept it under control so far and have had no problems looking after the baby, breastfeeding etc. All in all the whole process went remarkably smoothly so I hope your friend is as lucky as me!

[Sms94]

is your friend on Facebook? If so, there is a group on there called ‘rheumatoid arthritis (RA) support for pregnancy & TTC’.

I joined jt a while ago as I’m of child bearing age and wanted to get as much info as I could about it all. X

[Maple_22 in reply to Sms94]

I didn't know this so thank you!

[Durrell in reply to Sms94]

Oh that’s really good to know I’ll forward this to her, thank you so much….🙏🏻

[Maple_22]

Hello! I came off MTX and started on Cimzia about a year ago so we could start a family. Cimzia has been a bit of a miracle drug for me and I'm now in remission. I'm 32 have just found out I'm pregnant! I'm more than happy to speak to your friend if that's helpful. As Naomie said further down NRAS are amazingly helpful and gave me loads of advice. 🙂

[JustHereForGin]

Hi Durrell, I have RA and was on MTX prior to getting pregnant in 2020. Your friend will need to be off it for six months prior to trying to conceive. I went cold turkey and ended up having a horrible flare (having previously been in remission). I was put onto sulfasalasine which is safe to use in pregnancy and whilst breastfeeding. I'm still on it (in addition to hydroxychloriquine) and it's keeping my flares at bay.

One thing I can say is that pregnancy was great for RA. I had a dodgy blood test result and was advised to stop taking sulfasalasine about a month prior to giving birth. I only went back on any medication when my daughter was 10 months. I had no niggles at all until she was 9 months.

Good luck to your friend!

[Durrell in reply to JustHereForGin]

oh bless you, thank you for sharing your experience, she knows she’s to come off MTX & is fearing the worst re pain/flare etc.. so questioning if it’s worth it, it’s lovely how you have gone through it all & although yes you had painful times it’s clear being a mum has our shone your thoughts & fears I’m sure you also once had 🙏🏻.

[JennySLT in reply to JustHereForGin]

Great to hear your story! I’m interested to know who advised 6 months off MTX prior to conceiving, as I’ve been advised 3 months and have read this elsewhere too? TIA

[JustHereForGin in reply to JennySLT]

My consultant advised six months.

[1ChLoE]

Sorry I done have any experience of early RA and pregnancy, but just want to say what a lovely friend you are

[Durrell]

Bless you Chloe that’s very sweet of you, i just want her to have a truthful account & clarity of others experience. I’m not sure her consultant was very inspiring on the subject..