RA and trying for a baby - any advice?

[PP01]

Hi, I’m new here and wondered if anyone had any experience with RA and trying for a baby? I was diagnosed when I was 27 (am now 31). Luckily I was diagnosed early and put on methotrexate which worked really well for me, very few side effects and generally was able to carry on life as normal. Had one blip when I tried coming off the mtx after a couple of years in remission but went back on and all was ok, until now!

I now want to start trying for a baby so came off the mtx a couple of months ago (need to wait at least 3 months until trying to conceive). The doctor wanted me to go onto sulfasalazine and hydroxychloroquine as a pregnancy safe replacement but both drugs have given me quite bad side effects - bloating, cramping, extreme nausea and retching. The plan now is to introduce the drugs more gradually so starting with the sulfasalazine first and only increasing the dose when I start to feel well.

I’ve managed to get up to 3 tablet a day (2 in the morning, 1 in the evening) but have been stuck at this level for the last 4 weeks feeling so sick everyday and now the arthritis is back too (luckily just in my hands so far but also feeling generally fatigued and worried it’s a bit of a ticking time bomb until my symptoms get worse).

I just wondered whether anyone else had been through anything similar and how their RA was treated during pregnancy? I’m currently feeling so mentally and physically drained from the constant pain/ nausea and have no idea how I’m actually meant to conceive this baby when feeling so rough!

[Mermaid11]

I can't comment on being pregnant whilst on medication, as I wasn't diagnosed until after my 2nd child. I felt great whilst pregnant, never felt so good. It was after having my children I was having joint problems. Both those medications you mention made me feel so ill & I couldn't cope being sick everyday so I was taken off them.

Is there any other ones the consultant would let you try that's safe for you?

I'd definitely tell your rheumatology team how auful they are making you feel.

[PP01 in reply to Mermaid11]

Thank you, I have an appointment with my consultant in august (just a phone appointment though, finding it v difficult to get any f2f appointments because of covid) and the rheumatology nurses just want me to continue persevering with the sulfasalazine in the meantime in case I grow to tolerate it). From my research I don’t think there are any more DMARD options so it’ll be a matter of seeing whether I meet the criteria to move to a biologic.

[Boxerlady in reply to PP01]

No advice about the pregnancy but I think that you have to have failed 2 DMARDS and have a certain DAS score to qualify for biologics. I was considered for a biologic when there wasn't enough progress on Methotrexate and Hydroxychloroquine but as my DAS score wasn't high enough, Sulfasalazine was added.This triple therapy is working well for me but I only had temporary mild nausia with the Sulfasalazine (passes after a couple of days of each dose increase) and no side effects from the Hydroxychloroquine.

It seems unnecessarily cruel to ask you to continue if the side effects are that bad; maybe it's worth asking if there are biologic options for pregnancy? 🤔

There is some information on the NRAS website which might be useful and I'm sure that you'd get some good advice if you rang the helpline 😉

[PP01 in reply to Boxerlady]

Thank you! Yes I know there are some biologic options for pregnancy (or at least that you’re able to take until the third trimester). I worry about being able to hit the minimum DAS score though. Whenever I self calculate it, some days I hit it and some days I don’t. I’ll need to speak to my consultant and see if there are any allowances made if you’re considering pregnancy given your drug pool is reduced by 50%!

[Boxerlady in reply to PP01]

Well you'd think so wouldn't you?!

When they were considering the possibility of a biologic I was called in for a f2f with the rheumy nurse which was much better - it's so hard to assess joints yourself.

Hopefully you'll get more replies - it's always quieter on here at the weekend 😊

[Hidden in reply to PP01]

I‘m in a similar situation and they have made no allowances for considering a pregnancy. Basically stop considering a pregnancy and have MTX or have steroids as needed and struggle on I hope your team are more supportive x

[PP01 in reply to Hidden]

Oh no, I’m sorry that’s such a shame - I think that’s probably where I’ll end up with my team unfortunately from the initial vibes I’ve been getting. Annoying that there are drugs out there that can help and I do understand the cost concerns but it seems we’re in the group that falls through the cracks. I hope you’re doing ok x

[Hidden in reply to PP01]

It certainly seems very unfair that one may have to base one’s family size on needing methotrexate 😢 Good luck xx

[PP01 in reply to Hidden]

I know, it’s terrible that I’m already thinking I might just do this once as not sure I could go through this all again. Good luck to you too!

[Mermaid11 in reply to PP01]

How long have you been on sulfazaline? I must have only tried it for 11 or so weeks and couldn't continue with the side effects any longer. The nurse said if the side effects outweigh the benefits then we will stop. I would be persistent that you'd like a f2f appointment as dmards are not cutting it now, and why should you suffer any longer if you've given it a good go x

[PP01 in reply to Mermaid11]

This is actually my second attempt with it. I tried it first for a month back in March - that was when I was still on the mtx (as initially the intention was to try overlap given my previous bad experience coming off the mtx). I was probably a bit naive and didn’t expect to get such bad side effects given I’d always been fine on mtx and I just had way too much going on with long hours at work and getting married to give it a proper shot! The nurses thought the mtx might be exacerbating the side effects so then I started trying again in May once I was off the mtx. So been trying with it for 2 months now (2 weeks on 1 tablet, 2 weeks on 2 tablets and 1 month on the 3 tablets - still need to get up to 4 tablets and then potentially add back in the hydroxychloroquine!). Did you manage to make it up to the 4 a day?

I think I’ll keep trying until my appointment in august and if there isn’t any improvement with the side effects, I’ll be more forceful!

[Mermaid11 in reply to PP01]

Sorry to hear that it's your 2nd try at these, I didnt manage to get upto 4 a day. They made me so sick, I was at work and would have to dissappear to the toilet, I couldn't work with the public and need to dash off to throw up 🙈 and when I wasn't ill I'd have nausea all day. I would definitely be going back to your nurse if you can get hold of them, and explain its affecting you day to day. I cant imagine how you would feel if you fell pregnant and felt awful.

My very first nurse I saw, explained I have to jump through hoops and tick all the boxes first before the door to more expensive medication becomes available, which is wrong if you've tried a particular one twice.

Let us know how you get on x

[PP01 in reply to Mermaid11]

Haha I know the feeling, don’t know what I would have done if we weren’t all working from home at the moment! Thanks so much for all the advice.

[Knip in reply to PP01]

I can't offer advice re conception but each time I was pregnant I went into remission until after the baby was born. It is such a natural thing for a couple to yearn for a baby of their own and not easily put aside, so I really do hope that you find something that suits you very soon. Take care.

[KittyJ]

I was pregnant 5 years after diagnosis but it’s probably not going to help you as it was so long ago that guidance has changed ( I was told that hydroxy was a no no and I had to stop it) I would speak to your rheumy team as they will have come across this situation many times before. Don’t just suffer, if you don’t tell them they’ll just assume ever is ok. I did find that when I was pregnant that my RA improved greatly so I hope the same happens for you.

There are others here who have conceived while on RA drugs and I’m sure they’ll be along soon with more relevant experiences. Good luck though 🤞🏻

[JoH80]

Hi there, I was diagnosed after my first and managed sulphasalazine and this carried me through my 2nd pregnancy until about 4 months after and then had a massive flare. I had 8 months of steroids, tried hydroxychloroquine which gave me a rash, whilst breastfeeding and my doctor then put me forward for a biologic so that I could continue breastfeeding. I think that there have been policy improvements in supporting woman with RA in pregnancy and breastfeeding and so I would certainly approach your consultant about qualifying for biologic treatments (I’m on Imraldi and it’s been magnificent so far nearly a year on). As ever, things are very dependent on your doctor but if you can’t tolerate your current medication then it is their duty of care to help you find one that works and facilitates conception. Go to the NRAS for advice to support you and know that there are options and so you will get there. Best of luck

[Christinm]

Hello. I've had 3 pregnancies with Ra so I've got a bit of experience in this field 🙂 During my first pregnancy more than 10 years ago I was told that the only safe option was Hydroxychloroquine, which I stayed on till halfway through my pregnancy, then my RA went into absolute remission and I stopped taking it altogether. During the second pregnancy I was on Hydroxy all the way through and the remission was what I would call 'partial'. My joints felt better than pre-pregnancy but not as good as during the first one. During the third pregnancy I was allowed to take both Hydroxy and Sulphasalazine but struggled quite a bit with my RA.... Few years ago I was put on biologics, namely Amgevita and I was told if I planned any further pregnancies (which I have no more plans for, 3 pregnancies with RA is quite enough... 🙂) this medication is safe to stay on during pregnancy.

So, to sum it all up, it is quite possible to have RA and be pregnant, just it's way harder (and probably more painful) than the pregnancy without the RA.

You are most welcome to PM me if you have any questions.

[PP01 in reply to Christinm]

Wow, so encouraging to hear you’ve managed to have 3, thank you so much!

[Christinm in reply to PP01]

It was a very hard work, totaly worth it though!

[BoneyC]

I had children in 1993 & 1996, had to stop MTX but continued taking a NSAID, Indometacin. It was easier with the first pregnancy as I didn't have a child to look after, but with the second pregnancy it was tough being off MTX and an active toddler to contend with but luckily I fell pregnant quite quickly and everything went well. After around 18 weeks, my RA improved and I felt really good, but unfortunately it came back with avengeance soon after birth. Wish you well.

[Sheila_G]

I am so sorry I can't help you as I was 51 when I was diagnosed but I hope you can get medication sorted then you can start your family. Wishing you all the very best.

[Hidden]

I was diagnosed with RA 6 months after having my child. I would say I would want to be on the safest medicine if I was trying to conceive. I have tried many medicines over the 20 years and sulfasalazine was one I had a severe reaction to. I would try the Hydroxychloroquine first in the hope that this is all you need. My pregnancy was wonderful so perhaps your hormones will protect you and your baby. Many Best Wishes

[PP01 in reply to Hidden]

Thank you! I did have an initial go with the hydroxychloroquine but that also gave me the same gastric problems but maybe if I tried again on it’s own, it might be better. I’ve been trying to push the sulfasalazine first as understand that one can be more effective on it’s own than the hydroxychloroquine but will have a chat with my doctor.

[Hidden in reply to PP01]

Please check with your Doctors - I am not sure that Hydroxychloroquine is safe during pregnancy.

[PP01 in reply to Hidden]

Yup have done, it is now considered safe for pregnancy (and breastfeeding).

[Hidden in reply to PP01]

Best wishes!

[Durrell]

I haven’t experienced pregnancy & RA but, like knip says & I was told that the body goes into some sort of remission when pregnant & sadly after it’s does come back.. the body is incredible, it must be some sort if protection & they say scientists & doctors can’t quite understand how it happens. I would certainly talk about it with your Rheumy to confirm this is the case, then you can have hopefully a blissful RA free pregnancy. All the very best to you xx

[PP01 in reply to Durrell]

Yes I think that is the case for some women which is something to hopefully look forward to! Just need to navigate this in between phase!

[JustHereForGin]

I'm currently pregnant and going to be induced on Saturday. Like you, I came off methotrexate but was advised to give it six months to come out of my system before trying. I went cold turkey, as was in remission, but that was short lived and resulted in an enormous flare last summer. I went onto sulfasalasine and I currently have two tablets in the morning and two at night. Felt it took a while to work, but fairly happy with it now.

We fell pregnant last October, so it didn't take long for us to fall pregnant. That being said, it took me probably six months to get used to being on sulfasalasine.

Not sure if you were aware (as I certainly wasnt) but my obstetrician refused to let me get to my due date and I'd been advised throughout to be induced early. You'll also get more scans as there is a link between RA and your baby's growth. But that's nice and reassuring.

Hope you can power through. It'll all be worth it!

[PP01 in reply to JustHereForGin]

Ah congratulations! I knew you’re classified as a high risk pregnancy so get more scans etc but didn’t know you had to be induced. Wishing you and your new baby all the best

[JustHereForGin in reply to PP01]

Thank you! It might not be the case for everyone, but my obstetrician made it clear early on that I'd be induced.

[GB17]

I am about to start IVF treatment and started taking a biologic last summer - Cimzia - specifically chosen as I was due to start the IVF. I was advised that it is safe to take through all 3 trimesters. I am also taking hydroxychloroquine too. Wishing you all the very best with finding the right treatment!

[PP01 in reply to GB17]

Good luck with the IVF! Yes I’ve heard a lot about Cimzia and that it’s considered especially safe as it doesn’t cross the placenta at all. Were you on a biologic before or just the DMARDs?

[GB17 in reply to PP01]

Thank you! No I was on Ciclosporin before which had been working well until a bad flare up last summer. And so given I was about to embark on IVF we took the decision to start the biologic then and touch wood is doing it’s job!

[Kim-NRAS NRAS]

Hi there, not sure if you have looked at the NRAS website yet but here is the link to all our information on pregnancy nras.org.uk/resource/pregna... - there's guidance and articles about all manner of things which you might find useful. Please also feel free to give our Helpline a call for a more in depth chat, they are open Monday to Friday 9:30am-4:30pm on free-phone [phone].