NRAS
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RA and getting pregnant

Hi all. After a bit of advice. I’ve seen my consultant rheumatologist but got opposing advice from NRAS site online. Myself and my husband want to try for a second baby this year. I was diagnosed with RA 3 months after giving birth to my daughter. She will be 2 in August 2018. I had no RA symptoms prior to this but then it came on so suddenly about 4-5 weeks after giving birth and to say I was in agony from head to toe is an understatement. The RA is still not under control. I have a severe flare up about once a month. I’ve been on methotrexate since Feb last year. Have discussed with consultant that I will come off this in March 3 months before we intend to start trying for a baby. I have gone cold turkey on meds b4 last year just to see if my arthritis had settled on it’s own as there is a school of thought that if it was triggeRed by pregnancy it can sort itself out eventually (mine didn’t and came back with a vengeance). My rheumy has suggested certolizumab. I asked if this is safe to use in pregnancy and she said ‘it’s licensed for use during pregnancy’. On the NRAS site it describes this drug as safe to use whilst trying but women then tend to come off meds. I suggested this to my rheumy and she said if my arthritis flares during pregnancy it can result in problems for the baby such as lower birth weight. I’m feeling very confused as to what to do. I really wanted to come off all meds altogether as I had read that symptoms can subside during pregnancy but it took us over a year to get pregnant the first time so I don’t know how I would manage my RA if it takes a long time to get pregnant again. My rheumy also said that being off meds altogether whilst trying could actually make it harder to get pregnant too as my immune system will be hyper active. Does anyone have experience of has anyone been offered any other advice? I’m really worried about this.

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Oh dear, really sorry I have no advice for you. What an awful predicament. As a mother myself I can well understand your anxieties. My problems started when my son was in his twenties, so I'm no help at all to you. Didn't want to see your post go unanswered.

Hopefully someone in same situation to you will offer some advice.

Very good look to you.

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hannahsexperiencethroughpre...

The above is a link (hope it works) to a blog by someone who has had RA since she was about 16 and is now married and pregnant with her first baby. I think she stayed on one of the biologic drugs till she got pregnant and then came off it, I'm not certain about that but Hannah explains in the blog. Hope it's helpful for you.

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For my first pregnancy I was on hydroxy (1988) and stopped once confirmed and stayed off drugs until after the 2nd (2 years later). For my third I was on Gold (1999) and stopped once it was confirmed and stayed off drugs until after my 4th. For all my pregnancies I have been OK whilst pregnant and for the first 3 for quite a time after birth but after the fourth I had to stop breast feeding to commence treatment after 3 months. Farm

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Good to know your symptoms subsided after the pregnancies. I had to stop breatfeeding far too soon due to the severe onset of RA shortly after her birth and no one knowing what the hell was wrong with me so I was on all sorts of pain medication until I saw a fantastic female GP who knew straight away.

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Oh hun, I'm so sorry you are dealing with this. I've heard that pregnancy seems to halt RA until the baby is born....So please follow the advice of young women in your situation....but I'm going to tell you my story.

Before I had ever heard of RA, both my cousin & I became pregnant. I wanted my baby to be healthy so I ate & drank everything healthy...I even refused to drink diet coke (my addiction at the time) or anything that wasn't natural.. My cousin drank alcohol, injected heroin, etc. Guess what? My baby boy passed away shortly after birth, eventhough he was a healthy weight. My cousin's baby was under weight, addicted to heroin and in hospital for along time. My cousin's baby girl survived and is now completely normal, she is now 30yrs old. My baby didn't survive....Guess what?...It just isn't fair. I went above and beyond for my baby, and my drug addicted cousin didn't.... sometimes life just doesn't come out the way you expect it to be.

I guess what I am trying to say is please follow the advise of your doctor...but never allow anyone or any fear stop you from being a mother. You & your family deserve to grow & love.

All my love,

Sue

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I too got RA after having my first child. I am now pregnant with my second. I too had conflicting advice and did a lot of research about drugs in pregnancy. I ended up stopping all my medication and went on steroids (prednisone) for the first 4 weeks of pregnancy, which my Rheumatologist said was safe. My obstetrician told me afterwards that there is risk of cleft palate and I should try not to be on steroids again until after 12 weeks, preferably 20 weeks. I was lucky enough to get pregnant straight away so this made it easier.

From 4 weeks to 12 weeks it was hard and I felt sick and my joints gradually got worse. My obstetrician said that my joints flaring would not affect the baby, even though this was not what I had read. After 12 weeks my joints got better so I can cope now so I am hoping to go through the rest of the pregnancy medication free.

I just hope I can breastfeed. I have been advised that prednisolone is safe, but it still worries me. Hope this helps and hope you get to have your second child.

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Thank you for this and congratulations on your second pregnancy! This just shows that we are being given different and conflicting advice. It’s so hard to know what to trust. Did u stop all meds b4 trying to conceive? I’m thinking that I definitely want to try and go drug free if I get pregnant but I worry how long it will take this time around and how I will manage with the RA until then. I also had severe sickness throughout my first pregnancy which again worries me how I will cope with a toddler, RA and working! RA does add another complexity to it all doesn’t it.

I hope u r able to breastfeed also. I had to stop breastfeeding my first after 5 works as that was when the RA symptoms started badly and I was back and forth to the doctors and on all sorts of pain meds b4 they knew what was wrong with me. It still upsets me now so I haven’t even given breastfeeding much thought at the moment as I just assume that I will have to be straight back on meds after birth. The lady above who said she was symptom free between pregnancies has given me some hope though!

Good luck with the rest of your pregnancy and I hope your joints remain calm so you are able to have a good pregnancy x x

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Thank you! I was just on prednisolone when trying to conceive. Yes you’re right, RA does make it a bit more complicated when life is already busy with a toddler! I have actually had people say a few times about this pregnancy- “I guess it wasn’t planned” and they seem shocked when I say that we were trying, which has upset me. I hope you don’t get anything like that.

Good luck with getting pregnant. Really hope it all happens smoothly for you and you get to have the family you wish for xxx

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Most women go into remission while pregnant. They do quite understand why. But the problem comes after. Like Nettac, my family has grown. All children are now adults. I could not imagine dealing with the needs of a baby or toddler with Ra but we do what we must.

It is a very difficult decision. I am certain there are many studies but would recommend talking to your oB.

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Monica Aggarwal has 3 little ones ( healthunlocked.com/nras/pos... ) & Jenn has 2 ( healthunlocked.com/cure-art... scroll down to video, rapainmanagement.com/living... ). They may be useful resources for you, EmsMac? 🤔 Wishing you the very best. 😌 🙏 🍀 🌺 🌞

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Hi EmsMac, sorry to hear that you are in this confusing situation. We have some updated information on Certolizumab (Cimzia) which you may find useful: goo.gl/N1HrVd

Many Thanks,

Katie

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Thank you this is very helpful.

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Hi Ive just seen your post.

I, like you, started to have RA symptoms a few months after having my first child.

We started trying for a second when he was 20 months old. Unfortunately at the same time my symptoms started to flare & for the next 6 months or so I was in agony. I tried lots of different anti inflammatories (diclofenac, meloxicam & piroxicam) as well as sulfasalazine, hydroxychloroquine. However none of them worked fully to control my symptoms.

I then switched onto Benepali & came off the anti inflammatories. After a few weeks I saw a significant improvement.

I think the anti inflammatories stopped me ovulating so once I came off them my body kick started ovulation.

I’m currently 5 months pregnant with twins. My rheumy never put me on mtx knowing that we would eventually want to try for another baby. He has allowed me to stay on sulfasalazine, hydroxychloroquine & Benepali. I’ve been told that the risks of staying on the medication (higher chance of infection for babies & me when they’re born) out way the risks of coming off the medication and flaring up (low birth weight for the twins).

I found that each doctor has different opinions and so do most websites so it is very hard to decide what meds & what course of action to take. But I certainly couldn’t cope with a flare, being pregnant and having a 3 year old to look after so I decided to keep up my meds throughout pregnancy.

Good luck!

x

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Hi Liz thanks so much for your reply and congratulations on your pregnancy and twins! That’s amazing news! Yes I find different doctors have different opinions. I think i’m going to try the biologic they have suggested starting in March as we hope to try for another baby in June when my little girl will be 22 months! I’m having a rotten time of things at the mo as i’m now also extremely anaemic and my gp has requested more blood tests as he’s concerned it may be thyroid related now! I just can’t let all this prevent us from at least trying for another baby. Good luck on the rest of your pregnancy and congratulations again here’s to a healthy and happy pregnancy x x

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Biologics are a game changer so I’d definitely recommend! If it wasn’t for us having twins & if my symptoms were under control they would have taken me off the Benepali at about 12 weeks if not slightly earlier but each time I’ve tried to reduce the hydroxy & sulphasalasine I’ve stark get niggles again so I know I’m not ready.

Don’t get disheartened with all the mixed advice. It’s a mind field but so totally worth it.

Good luck with your journey. xx

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I have AS and was put on Benepali because we wanted to try for a baby. 6 months later after starting Benepali we got pregnant! Am now 9 weeks so still early days. Have been told to take this throughout the pregnancy and BF with the only caveat being that the baby cannot have any live vaccines for the first 6 month (which is only 1 injection and they just have it a couple of months later than others). My consultant was great so definitely talk it through with yours x

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