Another pregnancy related question

Hi all

I asked a similar question a few weeks back about pregnancy and arthritis. I've now been off Enbrel for 8 weeks and have just been told by the rheumy team that being of it for 4 weeks is ok before trying to conceive (TTC) as opposed to 3 months (bit of a difference!!!) I've been struggling with a bad flare over the last few months but a strong boost of oral steroids seem to be helping. I'm in the process of reducing the dose and am currently on 35mg reducing bt 5mg per week. My aim is to get to none at all as I'm really scared about becomming pregnant whilst being on steroids and am now scared about having to take steroids during my pregnancy as I have very active RA.

The rheumy team have told me that it is safe to be on steroids during pregnancy but I am still really really worried about them harming the baby in some way. I'm not sure that I could cope with the guilt if something were to happen. Also, the thought of being on steroids for another 9 months really frightens me.

Can anyone offer me any advice to ease my worry?! Should I give up on the pregnancy idea all together if I'm this concerned as it's not going to help with my RA.?! At the same time I am now desperate to have a baby and at 33 time is ticking for me.

Thank you!

19 Replies

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  • Hi, have you spoken to your GP about this as he may be able to refer you to gyne for reassurance? Sorry but that is all I can say as I am in my 50's now. Good luck for your baby.xx

  • Hi

    I am soooooooooooooo proud of you! Trying this at all is very brave! I am 32 and have had RA since i was 10, I too can hear the clock (loudly;-)! As yet i haven't been brave enough to stop my enbrey to try to conceive (amazing drug) this seems to be the only thing that holds my RA reletivly at bay.

    Have you both considered surrogacy or adoption? We are thinking about those options too and there is a strong argument for them, i just wish adoption wasn't so long winded, and surrogacy wasn't illegal and so expensive! ;-)

    The only other thing i know which may be of some comfort is that oral steroids is not only helpful to you to calm your symptoms down but also will help the baby no end to thrive in the womb so don't worry about that side of things ;-) But i do get your worry about the side effects long term for you. Obviously in a ideal world you wouldn't be on anything during preganacy but we have to look after you too! I net a woman in my arthritis grounp who had a beautiful baby boy with as yet no health problems and she spent her whole pregancy and conception time on oral steriods and morphine!

    Hope this helps and PM anytime if you want ;-)

    Ella xxxx

  • Thank you for the reply! I haven't really thought about surrogacy or adoption, to be honest having a baby of my own is something that I'm yearning for now. At the same time I need to be sensible and not selfish for the baby's sake. I'm getting more and more worried now that I know I can start trying as I don't know how my RA will be. I could be ike the 75% of women with RA and go into remission during pregnancy but what if I'm the other % and don't and have to be on steroids as it's the only thing that seems to keep this horrible illness at bay.

    I've heard lots of reports of women with RA who have gone through pregnancy on steroids with no problems and the baby or now toddler is fit and well. My husband isn't worried at all and feels that the doctors and nurses have been dealing with this for years and know what is safe and what isn't. I can't help but worry though, as a natural worrier it's worse!!!!

    Maybe it's worth me going back to the rhuemy team and having a proper chat to try and get my head clear. At the moment I'm going to see how I cope on a very low dose of steroid.

    Thanks again!!

    P.s where do you mind me asking where in the country you rheumy group is?

  • Hi - I can't really help you because I'm 49 but I can say that I was strongly advised to take steroids during one of my pregnancies because I got covered in eczema (also unusual to get worse during pregnancy - most sufferers improve and I did with subsequent pregnancies) which became infected and I was told I might get blood poisoning if I didn't go on steroids. I panicked and refused to take them or to stay in the dermatology wing of the hospital as an inpatient as they requested.

    At the time I just felt like you re the steroids but looking back I think I was pretty foolish actually. The risk of blood poisoning which could have killed or damaged my unborn child was very high and I scratched, fretted, bled and suffered terribly from head to toe for 9 months and my baby arrived two weeks early and was diagnosed later as being on the autistic spectrum - which I blame on the eczema now. If I had taken the steroids as advised and been an inpatient for a short period (to get it under control) then I think I would have had a much calmer pregnancy which in turn would have helped my son in vitro probably.

    I hope this helps a bit and I think you should just put your faith in the medical profession - pregnancy has been around forever and steroids have been around a while so I'm sure they know their stuff. Good luck and I really hope you conceive and are one of the 75% who go into remission - if not it's only 9 months which is nothing compared to a lifetime of motherhood and it will be worth it I'm sure. Tilda xx

  • Thank you Tilda, that's really helpful to know. Hindsight is a wonderful thing isn't it and you feel damned if you do and damned if you dont with medication. I hope you're eczema is doing better. x

  • My lifetime of eczema came to an abrupt halt about 3 years ago with the onset of peri-menopause and I have none at all now - although eldest son (the one in question) is caked in it on and off and often has to take prednisolone now. Weird eh? Mind you for me it's been replaced by RA so I think I've won one battle and lost another on the health front! Hormones are far more powerful than many of us are aware and I relate entirely to your anxieties. However I have no regrets apart from not taking the steroids - having kids is amazing and exhausting in equal measures but I wouldn't not have done it for the world. Tilda x

  • Poor you! I hopethe RA isn't giving you too much grief. It's a horrible illness that I have battled with for the last 12 years and am only 33. I've tried to never let it stop me living my life though, you can't allow it. What treatment are you on for it? Enbrel has been amazing for me and I think a god anti-inflammatory diet helps. Good luck!

  • You might want to have a really good talk with your obstetrician/gynae about the whole medication thing and how to deal with it during and before pregnancy. Your rheumatologist knows what works for the RA, but the obst. is going to know better how it will impact on the pregnancy.

  • A few people have suggested this which I haven't thought about. I'll make an appointment with my GP and have a good chat. Thank you!

  • When I was first diagnosed with RA the consultant said he only heard of one cure, albeit temporary. He said and so, apparently did Dr. Christian Barnard, that getting pregnant was the cure but it only lasted 9 months! I had passed through my menopause, even though I was only 30 so it didn't help me but I would trust the experts in this. Go for it and good luck.

  • I'm sorry to hear that. I know that pregnancy can help with RA and you're right that I should trust the experts. I think going back to see my rheumy team will help to re-assure me. Thank you!

  • It may help you to speak to someone over the phone who has been through what you're going through. We do have a few telepone support volunteers that may be able to call you to discuss it further. If you wish to arrange this call 0800 298 7650 alternatively it may help to read the articles on the NRAS website about RA and pregnancy. You will find personal stories as well as information on research into RA and pregnancy and treatment before and during pregnancy.

    nras.org.uk/search_results....

  • Hi, I had intramuscular steriod injections to dampen down the flares when I was TTC after coming off MTX etc as well as taking a cocktail of oral steriods and NSAIDS and painkillers. I did feel beyond grim as my RA was very active and TTC took 3 years. I have ended up with a lot of joint damage from the length of time it too for me to conceive. However...eventually I was pregnant and I went in to remission at about 8-9 weeks pregnant and my twins are now 7!

    The rest of my pregnancy was easy and I was really well right to the end. No issues at all. Did go into a massive flare at about 8 weeks after birth but that is another story. I suppose what I am saying is that it was ME who was ill and suffered, not the babies. Good luck, have another chat with your dr/rheumatologist and fingers crossed that you are pg sooner rather than later as the delay is what caused the problems for me.

  • Thanks for your response but sorry to hear what you had to go through. My husband and I have given ourselves a time limit on TTC as I can't face a long time of pain. Were you on oral steroids during your pregnancy and if so have there been any problems with your twins?

  • Yes I did have oral steroids when I was pg and also for a while after. My twins were completely well and healthy (and still are). Best wishes.

  • I have had RA for bout 10 years and I found my pregnancy blissful, I'd turned down a lot od dmards before and didn't even take nsaids during pregnancy I felt temporarily normal, I had a complication free labour and I was ok until my son got unwell at bout 4mnth, not meds related it turnd out he is cows milk protein intolerant and I discovered this after putting him on formula because no breast milk arrived, the stress of getting him well and back to a healthy weight means I'm now on dmards but never would I change having my son. Also iv had a few issues with the posibility of early menopause so now I'm glad I had my son at 24 when things were better! I swear though during the 9 months I had no joint stiffness or swelling, its after I felt the RA with avenjunce

  • But not down to pregnancy I just hadn't liked the idea of taking the biologic and I'm taking it now to prevent more damage as I want to be active now with my healthy 3yr old boy Jacob :) good look and I hope u get ur baby

  • There's no need to worry about the pain when you're pregnant as it seems to vanish, i was told it was because your immune system naturally depresses when you're pregnant so your body doesn't reject the baby, so it also helps your RA.

    So can't give you much advice about drugs and pregnancy but I've proved 5 times that my RA is much better during pregnancy.

  • I went into remission when pregnant, my RA only appeared just weeks before I became pregnant, but it went away completely; I was told the same as Lydiabarlow about the immune system depressing itself.

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