Pregnant and terrified!!

My husband and I have been trying to conceive for about 6 months now, and this week my period didn't appear :-) We are both delighted and really excited and happy but.......

I have LUPUS :-( I've had it for about 5 years now, and presently it is very stable - i'm not on any steriod (haven't been since dec 11) and no anti-inflammotories (since Jan 12)

I did have some pre-pregnancy counselling at our local hosp before we started trying, and the consultant was lovely - think i'll need injections throughout and am on folic acid and aspirn.

Can't get the negative thoughts out of my head, and think I'm driving hubby crazy!! I know I need to wait till I meet with the consultant but its in my head!!

Thanks for letting me ramble on - feels good to speak to someone else, who may have been through the same thing

Alison x

7 Replies

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  • Congratulations! I think becoming pregnant is quite overwhelming for healthy mums too.

    I hope you don't have long to wait before you see your consultant and maybe a high risk ob/gyny too and get reassured that you are in the best of hands. Lupus pregnancies these days compare very favourably with healthy pregnancies..

    Your mention of injections suggest that you have APS and have perhaps had previous miscarriages. The only injections I know of in pregnancy of are those of Heparin a blood thinner, to replace the blood thinner Warfarin. It would be interesting to know what they had in mind if it is not this.

    I find that being well informed helps me feel more in control of a situation and reduces anxiety levels.I suggest you look into simple relaxation techniques, learn a few and practice them every day. It is hard on partners who might be pretty anxious themselves to know how to deal with the other's anxiety. Maybe he can come with you to your appointments? Or a few of them anyway.

    I always thought my hubby was supremely calm and took all in his stride. We'll soon have been married 46 years and it's ony recently I discovered how worried he has been at ttimes over the years.

    Hermione

  • Thanks, I'm a worrier anyway, so maybe relaxation tips are the way to go. Yeah I think it's cause of the antibodies. Hopefully it'll all be fine :-) thanks for replying

    Xx

  • Let me share with you my story, and please remember its only MY story and no relation to you. I had a baby girl in 2009 who was born healthy, although she stopped growing when I was 28 weeks pregnant so was very small. I then had 2 miscarriages before having a healthy boy, although he was a month early and had to spend time in special care as his lungs weren't developed. I had to inject clexane throughout, and at this time I didn't know I had lupus although looking at my blood results and symptoms I did have it.

    I was monitoroed very closely as I'd had a previous blood clot and I worried about every little thing! My consultant was really good and if I'm honest, I think the worrying got me through. I asked LOADS of questions about everything and amything and this got me through.

    Morale of the story, its good to worry. Worrying helps us come, so if you have a question don't be afraid to ask, there is always someone there who will listen.

    Hope all goes well xx

  • Id just like to reassure you that I had two pregnancies and healthy children.

    I had multiple blood clots in my lungs when I got pregnant with my first child. I was on clexane and had a normal birth and had a healthy (albeit only 5lb) son.

    My second pregancy 2 years later...I was on clexane and although there was a bit of a complication in labour, and I had to have an emergency cesarian, again I had a healthy daughter (6lb 7oz)

    Both my children are healthy

    As long as you are taking the preventionary medication you should be fine.

  • Congratulations, that is wonderful news. My story is a little different to yours but I hope it helps, during my 1st pregnancy I was closely monitored as we already knew I carried the lupus gene (due to a strong family history) but was dormant and remained so. Again with my second pregnancy I was closely monitored and everything was fine although she did arrive 4 weeks early. When she was 6 weeks old I developed my 1st symptoms (this was early July 2000) and by September I had my diagnosis, but against all I had been told I found out I was pregnant again. I went through the whole pregnancy on mid dose steroids and with careful monitoring, extra scans etc. My 3rd daughter arrived 6 weeks early and spent 2 weeks on scbu due to jaundice and under developed lungs. However out of all 3 pregnancies the last was the easiest even with the lupus and a baby to deal with.

    I made sure I asked questions about anything I was unsure of and kept asking until I fully understood.

    I know it's easier said than done but try to enjoy this time and ask as many questions as you need to so you fully understand everything that's going on.

    Good luck

    Wendy x

  • Thanks, it's just daunting but im so happy!! Gp is going to contact specialist consultant & I'm sure I'll see him soon.

    Alison x

  • Hi Alison, Congratulations ,my daughter has been unwell for years with what turned out to be severe systemic lupus which had damaged her heart valves scarred her kidneys,caused swelling on the brain and spinal cord etc.

    When she became pregnant 3 years ago she didn't know she had lupus that wsd causing internal damage ,but she carried twins full terms. With no problems what so ever,even though at that time she had severe undiagnosed lupus.

    Hope all goes well for you, take care Sandy.

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