Off meds as we want to try for our first baby

My wife was diagnosed with RA at the age of 24, the first 2 years were a real struggle for her, but the humaira and methotrexate combination had really helped. But we are now looking to start a family, it's been 6 weeks since she came off her meds and she is really struggling. And I'm struggling to see her in so much pain to the point where I'm wondering if we need to think about adopting. Anyone else on a similar situation as my wife an I?

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11 Replies

  • Hi, Im so sorry, this must be awful for you and your wife. I have had children before I was diagnosed, the youngest is almost 5 and older one from a previous relationship nearly 17. I am also in my 30's so I cannot completely relate, but I can empathise as we have been trying for another baby and it is devestating knowing you are trying but nothing is happening quickly, apart from getting increased pain that is. I have spoken to other people who did fall pregnant and the arthritis dampened during pregnancy so that is positive, plus straight after your wife can return to the meds. My partner knows how much pain I am in and I mostly I just appreciate him being honest with me. He has told me he really wants another child, as do I, and we both want to continue to take this chance together. I am sure your wife would appreciate you talking openly with her about your feelings and concerns to also discuss how she is coping herself. I am dealing with a lot of pain but am also so determined. Is your wife on any medication? I am still taking sulfasalazine which is not really helping but because of the pain level the rheumy has been keeping a close eye and been v.supportive about pregnancy, he has just recently been checking my xrays/mentioned a scan, to make sure no obvious sign of more wear & tear, He has said the methotrexate combination is what is recommended, but he knows that means no pregnancy so he has also said I can try azathioprine, which he told me, like sulfasalazine is safer in pregnancy. It's not likely to make huge amounts of difference but Im also still having cortisone injections too and physio. I am also now hoping the GP can help us to fall pregnant quickly... if that is possible. We have tried for almost a year. I am certain having the possibility of adoption will help you both with positivity but I truly hope things work out for you with this.

  • Hello Carer1,

    I'm so sorry to hear of you and your wife's dilemma. I don't have similar experience, I'm in my mid 40s and waiting on diagnosis. Just wanted to say that this is a great forum and offers so much support. I hope someone may be along who can help.

    Best wishes.

    Lee x

  • I am sure things have changed by now but in 1990 I had to come off my meds while trying for my second child. It was not a good time in my life the pain was awful then once I had my daughter I had so much trouble looking after her until the meds kicked back in and that took time. I am sure 24 years on they must have meds your wife can use while your trying for a family and while pregnant have you discussed this with her RA nurse and rheumatologist consultant?

  • Hi, I have been there twice and am now mum to two happy, healthy girls (age 3 and 1)! It is a struggle, but for many of us, pregnancy puts the RA into remission. There are some DMARDs you can take while trying to conceive, and some you can take while pregnant. Steroids also helped me the first time around. It's definitely worth going through this with the RA nurse and rheumatologist. I'll be honest, the worst part for me was a few weeks after giving birth, when mt RA flared. It meant the end to breastfeeding due to restarting meds, but as long as your expectations are realistic, the end result is wonderful!

  • I was diagnosed after my kids but remember feeling so ill after my youngest but not knowing why . Best advice is keep talking . If she wants to carry on support her but make it her decision .. she is lucky to have u and come here for advice any time xx

  • This must be so hard. I've been off meds for several months so can empathise to that extent - but it must add to the stresses of trying for a baby. the only non-meds thing I can recommend from personal experience is mindfulness meditation. That does help you cope with the pain- and could be helpful in childbirth. But its not a great situation, and I hope our support helps a little. - there are exercises on here

  • I was lucky I didn't get my RA till after my kids. But hAving kids is such a blessing and such hard work! I wish you both success x

  • Hi I've not had exactly the same experience but have not long had a baby. I'm wondering if you and your wife should discuss with the dr starting some medication that is safe to use in pregnancy. I took sulfasalazine throughout my last pregnancy and my baby was born happy and healthy. My thinking is that your wife may be able to get some control over her symptoms for you to be able to keep trying. So I would definitely discuss meds with the rheumatologist. Though she can't continue to take the mtx and humaira there are things she may be able to try instead. My RA got worse during the middle of my pregnancy as well so you need to be aware there are problems whilst pregnant too. My obstetrician was brilliant and had treated a lot of women with RA so had a lot of experience of the disease. It is a very difficult decision you both have to make but there are more options than your wife just going medication free whilst trying to get pregnant. Wishing you both lots of best wishes and luck xxxx

  • Hi was dignosticed with RA just at the some time I got pregna with my first daughter and I was not taking any meds and I came to find out that hormones make my RA worse. I had to wait until the end of the pregnancy to start my first meds (hydroxyquine) I try to breast feed but I was in to much pain and I could not move walk or hold any thing. With my second daughter I did not stop this meds but I had problems with the pregnancy and after she was born the meds did not work any more. We wanted Another child but after all what what happen we made the decision that it will be best not.

  • Hi.

    I am in a very similar situation in that my husband and I have been TTC for about 1 year now (unfortunately in that time we've had 2 miscarriages). I have RA which was managed with 3 DMARDS (mtx, salazopyrin and hydroxychloroquine) until last year. I stopped the mtx 4 months prior to TTC, but still take the other 2 as I was informed by Rheumatologist that they are safe to use in pregnancy. I also take low dose prednisolone (approx. 5mg, increasing to max 10mg during flares), and pain relief when required (although I only take this once I know I'm definitely not pregnant each month).

    Can your wife request a Rheum review or does she have a rheum nurse that can advise? There may be other meds that she could try whilst TTC to help manage her symptoms as much as possible?

    My rheum also mentioned that she could liaise with the gynae +obstetrics team (of refer me) if we were struggling to conceive, although from your post it sounds like the main thing at the moment is getting the RA under control.

    I really do empathise with what you're going through right now. I hope this reply helps :-)

  • Hi

    I am sorry to hear about the difficulties your wife is facing, I have RA and I hoping to try for a child after my wedding in march next year. I have been told that salfasaline and hydroxaclorqaquine are safe during pregnancy along with the steriod injections. Hope this helps

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