A moment to vent

Hi all

I need a moment to vent that isn't on my friends and family. I've been trying for a baby for almost a year. My rheumy told me I needed to stop enbrel before trying. I did and fell pregnant the first month but sadly miscarried back in December. In that time I've had lots of flares and had to have a knee synovectomy which meant stopping trying for a few months. I'm now back on enbrel after having another conversation with my rheumy who said I could go back on it whilst trying. I'm totally stressed out thinking that I basically need not have come off enbrel for all this time. He knew about my flares but never advised me to go back on it. I have been so determined to get pregnant that I've just grinned and bared it when I've flared. I'm now not sleeping and feel so distraught that I've put my body through hell when I probably didn't need to. I know that legislation says they don't know the effects of enbrel and pregnancy which is why I was advised to come off it. I just feel so guilty for not doing more research and getting back on the enbrel straight away. My head is all over the place. Sorry, rant over.

6 Replies

  • Oh Janeye poor you. Such tough decisions about what's best. I'm so sorry about your miscarriage. The miscarriage, your hormones, the messing around with your meds must be making you feel completely awful. I hope the meds kick in soon and you soon feel better. Don't beat yourself up about it though, we take advice from our rheumys because they're the specialists and we are meant to trust their advice and judgement. I haven't got any great words of wisdom to offer but really hope things pick up for you soon. I'm sure you'll get the support you need and deserve from here. Take care, Rosie x

  • Well I really feel for you, I tried for 10 years to have my first child. I know the feeling every month that comes along and the desperation you start to feel. However I learned that when you try to relax and keep as stressfree as it is possible then it is much easier in the long run for your body to conceive. I think only you can make decisions on whether to stay on your Enbrel or not. My big mistake was not to talk to my husband very much about my feelings.

    At that time I feel nobody understood and particularly my husband who was just more concerned about my health than me actually feeling maternal.

    Looking back in reality however he was completely right, it was important to me to be well because when I did get pregnant as you have found out it is difficult and sometimes unfortunately it doesn't work out. However I did go on to get IVF and Inow have three healthy children.

    I think is really important to talk to people about your feelings whether that be easier with your friends or at home or here. i found ranting are we really helped LoL!

    Another thing I found helpful was actually to telephone the hospital midwifery department and talk them, they are actually really glad to speak to people and give preconception advice. My consultant was very happy to tell me what to try and what drugs were helpful or not helpful and give me a more in-depth advice. You might find it helpful to to give them a quick ring and ask for their help.

    So keep ranting on here and let us know how you getting on.! axx

  • I absolutely agree with Allanah and Rosie - keep on ranting here and don't beat yourself up for not keeping on with the Enbrel when you were advised to come off it first time. You can't go through life wondering what would have happened if only..it just brings you further down and you need to conserve your energy and health whatever happens.

    I sometimes regret not taking steroids when I was pregnant with my first son because he was premature and later found to be on the autistic spectrum (Aspergers) and I'm quite sure that my terrible eczema and all the itching and infections during this pregnancy caused this as the other two are both fine. He is wonderful too and very special but he does have terrible eczema himself now. I do occasionally beat myself up for not listening to the doctors and agreeing to take steroids as they advised me to but then again I think that he is as he is and I love him that way and he would probably have been covered in eczema now anyway even if I'd done as they suggested.

  • Thank you Tilda. I do feel better having had a rant on here. I know you can't turn the clock back and I have to move on. On the positive side my RA has settled a lot so I'm feeling more normal. Onwards and upwards with baby making :-)

    Similar to what you said, you make a decision based on what is right for you at the time so you can't feel guilty about your son. He sounds like he is very loved which is the most important thing. These auto immune illnesses have a lot to answer for!!!

  • Yes you are very right about my son. He's just started his last year at uni - has a long standing girlfriend and deputy manages a pub so I'm not beating myself up either! Interestingly at the dermatology clinic he attends a woman told him yesterday that the type of eczema he has is a disease and would plague him whatever he ate or however much he cleaned his flat etc. She explained that if mine has now gone away, to be replaced by RA, then that made complete sense because this type of eczema leads to a very over active immune system. So no blame apportioned anywhere really and just the luck of the drawer. Have a great time baby making with no guilt please! X

  • A good 'vent' is essential for our sanity I think! This is the best place for it.

    Glad to hear your feeling a bit better and good luck with baby making.....hope we get to hear an announcement from you sometime in the future! ;) xx

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