Hello everyone! Hope things are as ok as possible 
I've had RA for a couple of years now and think (fingers crossed) that it's managed well by meds now. I'm at an age (32) where I'm considering pregnancy and having a child. I've spoken to my nurse who has explained a bit about the meds side of things but was wondering if I could ask you good people what your experiences, suggestions or advice are? as I feel quite stuck about wether it's something I should go ahead with or not, as I'm worried about how the RA will impact on my abilities to care for a child and if it will be passed on. I don't know if sensibly I shouldn't or if it's ok to! I know this is something only I can truly decide but I respect your thoughts. I'm aware this is a sensitive subject so please don't feel obliged to respond and I hope to cause no problems by posting this. Thanks in advance x
Pregnancy and having children when you have RA...advi... - NRAS
Pregnancy and having children when you have RA...advice please!
What an awful delima you find yourself in. To choose to be childfree is different from being forced to be childless.
Your doctor can advise you on the safest meds durring your pregnacy. Of course being med free is the best, but we do not live in a perfect world.
When I was 21, I was pregnant and lived a healthy life style. I didn't even drink pop, only juice, milk and water. My cousin was a party girl. She drank alcohol, smoked weed and cigarettes and God only knows what else durring her pregnancy.... My baby lived only 45 minutes. My cousin's precious baby girl was born addicted and and survived. No learning disabilities.
The point I am trying to make is, no matter what you do, no one can predict the future. Please don't allow this dreadful disease prevent you from being a wonderful parent.
All my love to you
Sue
Thank you so much Sue, I really appreciate how personal this is and i am so grateful for your response.
I'm so sorry to hear of your circumstances and truly hope you've found peace and happiness in your life.
You're absolutely right about life being so unpredictable and thank you for your hope.
I know deep down I'd love to have a child and its fear stopping me, but maybe life is about taking risks.
All my love to you too and thank you again X X
Yes, this is very personal, but I read your post and I felt compelled to give you my opiniion and tell you my story. I will always mourn my baby boy...
I am now 50 years old and I have raise 2 wonderful children.
Please don't allow this disease stop you from being a mother and then a grandmother. Who knows what the future holds?
Take care, and always feel free to pm me.
Sue
Thank you so much Sue, I may well pm you at some point as I really do appreciate the support.
Yes, I think losing someone is something you don't get over but learn to manage, I hope your baby boy is at peace.
I'm so happy to hear about your 2 children and hope you continue to enjoy them.
You're right, RA shouldn't take anything more from us than it already does.
Thank you again, you take care xx
Just like Sue i lost one children early at 24 weeks ,but when to go on to have two lovely children now aged 35 & 31, I found out that I had RA 6 months before my wedding, my husband and I was told it would be best not to have children, as at the time I was in a wheel chiar, with no light at the end of the tunnel to get out, I was 18 at the time. By the time I was 22 new ideas about how to treat RA was coming about, my new RA doctor & nurse, help me through all 3 pregnancy, with out them I do not think I would have gone through with the other two after the heart arce with the first. I am now not just a mother with two loving caring children, but a ninnie to a 20 months grandson son, who has given both me and my husband joy and help us through a rough patch in our lives, at the moment. You must find out all you can for your boby and meds and then its only then that you can decide , what is best for you and your partner. My husband has been my rock and has help me through times when I thought I wish I was dead, you must remeber your partner as well, as he will be the person who will be with you all the time and when baby is born that extra strength you will both need. I was once by my dad, you control this illness, do not let it controll you. I have tried to live by these words now for the pass 40 years.
good luck to you.
Hello, thank you so much for sharing this. I'm sorry to hear of your loss but so glad to hear you went on to have a family. Your advice is wise and food for thought. Thanks again and take care x
my nurse told me that if you want a child then it is safe to be on certain meds and a lot of women do this and it does not affect the child but on the other hand of course you are at a higher risk to miscarriage if you suffer from ra and the other thing you need to think about it is you would need to come off certain meds for at least three months before you even have a child and how that may affect your joints. I also believe that the fitter and healthier you are the better off you will be if you do decide to have a child. If you need to talk you can always message me and I will get back to you when I can.
Hello, thank you for this. My nurse has been good ish at talking through the meds but next time I see her I'm going to ask in a lot more detail. I'm generally well and healthy other than the RA so hopefully that would help. Pregnancy and parenthood are a bit scary anyway and the RA is another factor to consider, although it's good to hear it improves whilst pregnant! Thanks again, hope things are ok with you x
There are risks in everything we do young lady and a lot of people find their ra goes away during pregnancy,but as has been said so well your damned if you do and your damned if you don't. The main question you need to ask yourself do you really want children(you don't say your relationships status) If you do want children then go ahead as you will be well monitored throughout. xxxxx
Thank you for the reality check you're right, there's always risk and I know what I want, it's the fear and guilt (yukky emotion!) that are stopping me. I think I'm over thinking things! I'm lucky enough to have a wonderful partner
Thanks for your advice, I hope you're doing ok x
I am as well as i can be darling thank you. |Will write a post later and will explain all as i don't want to take away from your post darling.xxxx
How you are is just as important keep in touch and if you need a chat you know where to come xx
I do darling and thank you.cxx
Hi Simone
First of course I would say you have to take advice as regards your medication from your rheumatologist.
Second I'd say go for It!
I have had RA for 40 years. It has been classed as severe and I am now a bit of a wreck. But my two amazing grown up children and now 3 grandchildren have given me 37 years of sheer joy. Yes, a lot of hard work too, it hasn't all been easy, but as my RA progressed I managed to adapt. (N.B. I was lucky and did not have to work, and only did so part time when kids were older ).
The worst thing was not being able to do certain things with them - crawling around on the floor, climbing trees, camping (I need a bed! ), cycle rides . . but my husband and brother, sister, parents, friends were able to do all that. My children knew that was the way I was, and did not feel they'd lost out, it was just my problem.
Hopefully you will not be anything like as bad as I was with the better treatment there is now.
My children learned early on to do things for themselves - by the age of 12 my daughter could help with the ironing and my son was well able to hoover. Both were able to cook, clean, and use the washing machine. (Not that they always did! )
Added bonus - during pregnancy symptoms often are much reduced. I was able to have no meds whatsoever throughout my first - no RA symptoms at all and felt great! Second time not so good, but still OK.
Having RA does slightly increase the risk that your children may inherit the condition, in that they are a little bit more likely to get it that someone with no family history. But, so far, both my two are healthy. I have no family history of it at all as far back as I can go!
My advice would be to go ahead and enjoy - good Luck!
Hello thank you so much for sharing your experience. I'm really happy to hear that you've had a positive experience despite the RA and it's nice to be able to speak to someone whose actually been there.
I guess not all parents can do all things anyway, so if RA does cause a few issues its maybe not the end of the world as I feared it might be.
It sounds like your children got to learn about compassion at a young age which is a good life skill to have!
Thanks again and I hope life is treating you kindly X
I was dx as a child, had two children, first at 29 & second at 31. No problems at all. Had to stop all drugs but was allowed paracectamol and Naproxen. However, having seen a locum rheumatologist last week (who qualified circa 1971 when I was dx) he told me they don't allow Naproxen now, at least not in the early stages and after week 32, but surprisingly to me, they do allow some Anti-TNF's. Ideas about safe drugs have changed over the last 23 years so what was ok for me probably wont be for anyone now. RA certainly isn't a reason to not have children, good luck.
Thank you it's really good to hear people's experiences and to see that things can turn out well! Hope you're doing ok x
Hi Simone, I have had RA for over 15 years now and although it took several years to get pregnant I am fortunate to have a beautiful girl that turned one last month. I was restricted as to what meds I could take as you would expect through pregnancy and for the period I breast fed after.
Apparently about a third of people with RA go into remission while pregnant, I didn't, though my RA was generally improved. As predicted by my consultant I had a big flare about 4 months after giving birth but I am now on biologics and doing well. My consultant tells me the guidelines are changing and the biologic drug I am on will be allowed during pregnancy in the future should I decide to have more.
I won't lie physically there have been some tough days so having a good support network is important. There is a lot of sitting on the floor at baby groups which can be tricky but I found things like hydrotherapy helped me. Ultimately despite the difficulties I am so glad I went through with the decision to have a child and our little girl gives us much joy.
If you have any questions please do pm me.
Thank you so much! It's good to hear the honesty of the difficult days too but also great to hear different ways of managing them. Congratulations on your little one im on biologics at the moment so will see what my nurse says! Thanks again, hope you're doing well x
hey Maybe different specialists have different ideas on these things but I was always told that you need to come off biologics and methotrexate at least three to six months before having a child.
I am pleased you managed to have a child of your own.
I understand from my specialist that there will be one exception which is Cimzia as it is already used for people with Crohns disease who are pregnant without any negative effects on babies. He advised me in end of March the guidance is only just changing for those with RA.
Hi Simone, I can only speak from second hand experience but a friend, with the support of her rheumy team and her GP had a good pregnancy and a healthy baby boy. She has severe RA. And was extremely well supported medically throughout the pregnancy.
Best wishes whatever you decide.
X
Thank you! Being supported medically is always a worry so it's nice to hear people have had a positive experience, as it can really change things if you're left to figure things out yourself! Take care x
Oh go for it! I have heard of people with all sorts of disabilities have babies, blind, no arms, in wheelchairs etc. As long as its monitored well and you feel you are up to it I would do it. Love overcomes many obstacles and whatever RA brings it can't take away love for a child. You have a good partner too! Be strong.
I love your motivation thank you! Wise words. I hope you're doing ok xx
Not being able to have children I would say don't wait too long, I did & it didn't do me any favours despite medical intervention. My h had a problem too so we had double trouble. Go for it if the time feels right. As always though work with your team. x
Thank you. I think you're right in not wasting time and the sooner the better, im seeing my nurse in July I'm sorry to hear you had troubles though and I hope you're feeling well at the moment. Thanks so much x
Hi Simone_Holly
I have a slightly different experience in that it wasn't me that was trying to get pregnant 😚 However I have fairly aggressive RA that has seen me have three joint replacements in the past 17 years since I was diagnosed at 30.
My wife and I decided to start a family and after talking to my rheumatology team I was advised to come off whatever I was on at the time (can't remember now😊) as it could theoretically affect sperm production blah blah. Anyway I came off everything apart from prednisolone for about a year in total, if I recall.
We had a baby boy (now 7) and I went back on, possibly Humira. The next one was a little, erm, unexpected - although joyously welcomed and 25 months after the first we had a little girl (now 5). They are the reason for my life, and words cannot explain the love you feel for your own children. Pure, unconditional love. ❤️
As a stay at home dad I appreciate some of the difficulties you will face, and I'm not gonna lie either, you will face difficulties. Being a parent is bl00dy hard work. It's hard enough for people without a chronic illness, but for us it's super-duper hard.
As mentioned above its tough when you can't do things with them that you'd like to. Its tough when you mix with other parents / people and things that they can do without a second thought are almost impossible for you.
There are no words that will prepare you for that first few months (years😳). Particularly if you have a difficult baby (our first was a nightmare with hindsight).
But if you want children, don't deny yourself (and presumably your partner) because of RA.
They have given me a purpose in my life I didn't have before, and they are healthy, happy, intelligent little kids. They love you regardless. They don't care if you can't do stuff (well, they get used to it). They also grow up with a bit more compassion and understanding than they might otherwise.
Nobody can tell you what you should do, but if I had to make the decision again knowing what I know now - it would take me a millisecond.
Good luck with whatever you decide.
Kind regards
Ade
Hello and thank you for telling me your story I'm so so happy to hear about your little ones! And about how much you love them, I guess that love is what counts - not the RA. I know it will be difficult, but I love a challenge thanks again and I hope things continue to go well for you and your family x
Thank you Simone
I can honestly say with my hand on my heart, I have never for one second regretted the decision to have children.
Good luck with whatever you decide.
Ade
Simone_Holly , my boys were 2 1/2 and 10 months when I was diagnosed with RA. It was very difficult to manage a toddler and an infant whilst the RA was out of control (symptoms started when the youngest was 5 months and the RA didn't start to get under control until he was about 19 months old). I relied A LOT on my husband, who is amazing and super supportive. My kids understand that I have "bugs" in my body that hurt me and make me sick. They know that they will never go away, but sometimes the "bugs" are quiet. They are gentle with me and give me lots of cuddles when I am sore. My oldest, now 7 years old, offers me to lean on him to go up and down stairs when I am flaring, or to get out of a chair. I love that he is so compassionate, though I wish, as his mom, that he could be leaning on me, and not the other way around!
Good luck to you as you make this important decision.
Hello and thank you for this, I think it's amazing how well your children have adapted and the lovely relationship it sounds like you have with them. If my children learn compassion because of RA then I think that's ok thank you again and I hope you're well x
Thank you! And good luck with your own journey.
Having children is a challenge whether you have RD or not. I have had 4 children, 27, 25, 16 and 13. I was 19 was dx and on chloroquine when I fell pregnant at 21 by accident so it was not a conscious decision. I was not as badly affected the first time around but by the last two I had was more affected by RD. Fortunately for me my symptoms eased during pregnancy and I was able to breastfeed without needing any meds. Between 2 and 3 I was on gold. For the fourth it was different I was 35 and my body struggled and he was born prem and he did have club feet but could not find any correlation with RD.
Just give a bit more thought to how you can manage the pushchair, car seat with fastenings and how they come apart and/or fold and clothes fastenings. Have two nappy stations - one up and one down so you don't have to do the stairs too much in the early days. If having to bottle feed because of going back on meds try holding different shaped ones to find the easiest.
I might not have been able to run around with them but if the garden is secure they can still run and play - it is surprising what you can make up for them to run with you sat down - Just being out there with them can be enough. Dominos, card memory games and crafts were used quite often.
They have grown up knowing I am not right and that at times I need them to step up and help me do things. There is no way you can predict how your disease will progress. Farm
Thank you for your honesty and practical advice! I can only imagine how hard it might be but your experience is encouraging! I hope you're keeping well at the moment x
I've had 2 gorgeous sons (now 28 and 30) since being diagnosed in 1978, but I did manage to be off all drugs and used acupuncture, diet etc to keep the disease under control, whilst pregnant and breast feeding. I was also very careful about what I gave the boys to eat...nothing that I thought I was having problems with eg meat, sugar, wheat, processed foods, dairy...much easier to do now than it was then!
Thank you for sharing this! I'm so happy to hear about your boys and I hope your family are well. X
Very well thank you, and both have excellent teeth too! They now eat most things, but very little meat and neither of them drink milk, and both do lots of sport and are very active and healthy. I also didn't give them the full set of vaccinations as small babies, as I was worried about compromising their immune systems. I did lots of research and had loads of discussions with medics and found them very supportive when I explained my reasons. But they have had vaccinations as adults before travelling to far flung places ie they make they own decisions now of course.
From the point of view of someone who has a mother who has had RA since she was 14, I am extremely glad she did decide to have children! I guess I was lucky that my Dad really tried his best to help mum out when she was flaring, and especially in the years when she didn't have particularly effective treatment (remember she is 85, so there weren't the treatment options around then that there are now), but I actually got well into adulthood before I realised she even had RA. She may not have done a lot of very physical stuff with us, but I definitely didn't miss out on anything with her as a child. Mum did say a few years back that she felt guilty about having passed on RD to me, but the way I figure it, I could have got any kind of disease or condition and I would rather have had a good mum with RA (and the possibility of passing on the tendency to get an autoimmune disorder) than a bad one who was completely healthy (if that is even possible). In fact, I probably got my AS from my fathers side of the family anyway.
If you want kids, take advice about medication use, but just go for it. You will find a way to cope, and you will find a way to build a good close relationship with your children (even if it isn't through running around on the football field). Chances are, treatments will continue to improve so much that RA just won't have the same kind of impact on your life as it did on my mother's anyway.
Thank you very much for this, it's so useful to hear about experiences from "a child's" point of view and the things you've said make sense. I'm really glad you feel so positively about your experiences and thanks again for sharing them. Hope you're well. Take care x
You are still young so don't let the RA control your life have children. Why shouldn't you. Yes there might be a few problems, but thre are numerous people on this site who have had children whilst suffering with RA.
Thank you. The responses from everyone have been so useful and supportive! Hope you're keeping well x
Dear Simone, Please give our Helpline team a call on 0800 298 7650 or email them on helpline@nras.org.uk as we've just this week received lots of really helpful information on this topic from a rheumatologist who has first hand experience of working with young couples where one has RA and who wish to conceive. Far too much to post here but we will be featuring an article on the topic in the next NRAS Members' magazine in autumn as well as getting information up on the website shortly.
Please do contact us we can really help.
Hi Clare! Thanks very much, I've given the helpline a call and they're emailing me hope you're ok x
Thank you soooooo much!!! X
Hi there ! I was 33 when diagnosed. So just a little older than you. It is a big thing to get around but I knew I wanted to have children. So within a couple of years my partner and I married and got on with the job. Unfortunately, it didn't happen. We had many tests and were told there was nothing to prevent pregnancy but it just didn't happen. I had an ovarian cyst removed. Still nothing happened. All this time my RA was unmanaged as the sulphasalazine and aziothioprine weren't helping as much as they could. Methrotrexate is obviously a no no for those trying to concieve. My rheumatologist was very supportive and was happy for me to use steroids to help me along. Eventually, 4 cycles of fertility treatment later and when we had all but given up we became pregnant. That wasn't the only shock. A few weeks later we found it we were having twins. My pregnancy was fairly straightforward being multiples and now in my late thirties I was considered high risk but generally I felt great and my RA was practically non existent. I delivered 2 small but perfectly formed little boys at 35 weeks. I was warned it might happen but my RA returned when they were about 6 weeks old. It was awful. My wrists and hands were swollen and weak. I had no help with the boys so it was hard. Breastfeeding can help keep the symptoms at bay but I had to give up with that after a few weeks. I was put straight on Methotrexate but I am one of the few who it didn't work for. My rheumatologist was very supportive although asking him to babysit might have been pushing it a bit ! He tried short term steroid injections but still not help. Finally, I was referred to another consultant and was given one of the biologics. I have never looked back pain wise. It took nearly 9 months to get this far though.
So yes, the first few months of motherhood were challenging. But having twins and no support locally was probably quite unusual and having twins even if you are healthy isn't easy.
My boys are now 5 and they are the love of my life. The hardship was worth it all. We are very close.
I do suffer badly from fatigue though. And have had a lot of UTIs related to the drugs. I have never returned to work but that is for various reasons.
I would say if you are keen to have a family don't wait. I was diagnosed with unexplained infertility. Which means they don't know. It could be RA related but maybe not.
It is hard work after though but if you have a good support network and make sure your regime is managed well it shouldn't be a problem.
Sometimes I wish I had more energy for my boys but I know we have a great life together.
Please get in touch if you have any specific queries. I feel I could write a book !
Hello, thanks for this, it's good to hear about how you found things, especially after the birth. Congratulations on your twins! It's lovely that you've got such a good relationship with them. Thanks again and hope you're doing ok x
I'm 35 now, I've had RA my whole life. My parents were told I might not be able to carry a child but advised that if I did decide to have them then it was better sooner rather than later. My daughter was born just before I turned 22. During my pregnancy my RA went into remission but came back with a vengeance as soon as she was born. For some reason people assumed I was definitely going to have an elective caesarean but having RA does not mean you can't have a natural birth. This might have been due to my spinal collapse in childhood but I wanted to try for a vaginal birth. I went 10 days over my due date and was induced. I think looking back I would have liked the option of a water birth or at least to spend time in a birthing pool before giving birth because this would have been beneficial in relaxing my whole body. She was born naturally and I only needed a bit of pethadine and gas and air. There was no way anyone was coming near my spine with a needle.
I couldn't breastfeed because I couldn't position her properly and trying to caused a lot of pain in my wrists. I also needed to go back on something to slow down the RA so I decided reluctantly to formula feed. This was the best choice for my family BUT because of the breast is best mantra I felt like a failure and this did cause some post natal depression. My RA has fluctuated a lot through the years and sometimes I have been in remission and other times very poorly and it's fallen to my now ex-husband to do a lot of the hands on stuff, but I was always able to read stories and help with homework. My daughter was very considerate and caring when she was little but as she has reached the teenage years she's a bit dismissive of when I am in pain and tired. She absolutely NOT my carer and I struggle to get her to understand that sometimes I really could do with some help. Her father and I separated perfectly amicably 18mths ago and she spends the weekends with her dad. He is a lot more confident than me as a parent and of course has a lot more energy. I have a new partner who she loves to bits. We are getting married next May.
Although I thought I would have another one, I suffered an early miscarriage when my daughter was five. I had also had one a year before I got pregnant with her as well and emotionally I knew I couldn't risk going through that again. My miscarriages were not connected to the RA.
Parenting is emotionally and physically draining for everyone. It absolutely turns your life upside down. Is it worth it? Well when my 13year old is slamming doors and shouting that 'I'm ruining her life' because I asked her to wash up sometimes I wonder BUT I couldn't imagine not being a mum. It's an emotional rollercoaster that makes having RA look like a walk in the park but for me personally she's worth it.
Talk to everyone. Would you get any help from your family or your in-laws? As for passing it on, yes RA is hereditary but it's still pretty rare to pass it on.
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