Lupus and having babies?: I would love to hear from... - LUPUS UK

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Lupus and having babies?

zebedee01 profile image
7 Replies

I would love to hear from any ladies who have lupus and have had babies (good or bad stories please).

I have wanted to have another baby for 4 or 5 years now but was diagnosed with PCOS, I didn't have any periods for 4 years at all, I had to take medication to make me bleed every so often, anyway, just recently they have started returning which I am thrilled about. But I was told years ago that it would be way too risky to get pregnant until I lost 5 stone and came off my anti-depressants because I have lost a baby at 5 months before. And now they are also telling me I should wait til my lupus is under control, but this is so hard, i'm kind of thinking I might have a little chance of getting pregnant after all these years with my periods returning, why should I stop it happening?

So has anyone else had babies with lupus, how was it? And how do you manage with a baby with the tiredness and everything?

Thank you xxxx

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zebedee01
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crazyk profile image
crazyk

Hello. I have 2 children aged 6 and 3. I think my lupus probably began after my first child wS born but I was o ly diagnosed last year. I also have mild APS and have been told I am very lucky to have had 2 successful pregnancies.

My first child was difficult to conceive and needed a fertility drug. Looking back, I wonder if I was having early miscarriages without realising.

Both of my pregnancies went well and the births were straightforward and relatively easy.

It has been hard coping with 2 small child with fatigue. I tend to suffer mostly with brain fog so that adds another stress to a busy life. I use to think it was normal to live like a zombie in a kind of bubble but then I realised no-one else did. There are frequently days when I feel like I can't quite touch base with the world around me as I am in so such of a fog.

I am very fortunate that I have a very supportive husband. I'm not sure how much he understands but he does so much for me and allows me to take a little bit of time out.

Having children is very hard but I would not be without them. I love them both dearly and felt very blessed to have them.

If I could give up work I think I would be able to cope so much better with the pressures of family life but unfortunately I can't do that.

Whether or not to start a family is such a difficult decision to make at the best of times. You need to be honest with yourself and get as much support around you as you can. Always ask for help and never refuse it!

Whatever you decide to do I wish you the best of luck.

zebedee01 profile image
zebedee01 in reply to crazyk

Thank you very much hun xx

May I ask, what is APS?

Sorry, I didn't say in my first post that I do have an 8 year old boy :) But haven't been able to conceive since I have wanted another about 5 years ago.

I had an early miscarriage in 2001, and lost my daughter in 2004 at 22 weeks, then had my son in 2005. My rheumotologist said to me that the lupus probably was the cause of my late miscarriage in 2004, even though nothing was picked up on at the time. When pregnant with my son I took aspirin every day and things turned out ok!

I must admit over the past few months I have struggled at times even with my 8 year old.

zebedee01 profile image
zebedee01 in reply to zebedee01

also, what you describe feeling like a zombie in a bubble and not in touch with the real world, this is how I have felt for years and always thought it was my depression/anxiety!! I never knew this could be down to lupus!! This explains why I never get better, why my agoraphobia never gets better, because all this time these symptoms have been put down to that. This must be the reason why sometimes I felt this way and sometimes I didn't, if that makes sense?

Flavnix profile image
Flavnix

I was diagnosed with Lupus in 1989. I had been put on Steroids. In May 1990 I discovered I was pregnant. Ryan was born in Dec 1990.

There were concerns from the medical professionals, I had to come off steroids very quickly, had to have a very early scan and they arranged for home help services when I came home as they didn't know how my lupus would react!! Ryan was born by elective c section.

I kept really well during the pregnancy and for 12 months afterwards.

Ryan is now 22, healthy and getting married next year.

But..... That is just my experience others' stories will be different.

Good luck with whichever decision you make.

AlisonM profile image
AlisonM

I'm typing this holding my 10 week old son ?? I've had lupus for 6 yrs & saw a specialist obstetrician b4 I conceived who went through things with me. I managed to come off steroids & anti inflamatories in the year b4 we started trying- he said it would increase our chances. We conceived within 6 months of being off all of those drugs, I only took 200mg of plaquinel throughout my pregnancy along with high dose folic acid, daily aspirin & injections called clexane which were for blood thining- I have to ro antibody. I was closely monitored by midwifes & docs at my local maternity hosp- got early scans then more growth scans later on. I felt good during my pregnancy with no flares & am still not back on steroids & anti inflammation drugs- I can't believe how lucky I am. I hope you can conceive but I agree that having ur lupus under control will help loads.

Good luck, hope my story gives you hope!!

Alison xxx

Ps- I do get tired & fatigued esp with night feeds still going on etc- that's what my fabulous husband is for!!! xx

crazyk profile image
crazyk

Hi Zebedee. APS stands for antiphospholipid syndrome, also known as Hughes syndrome nd sticky blood. I don't know a lot about it as it doesn't cause me any problems. It can cause blood clots and is a common cause of recurrent miscarriages

it often goes with lupus. It might be worth getting tested if you have had a few miscarriages as they can treat it during pregnancy as far as I know. I'm sure someone on here will be able to give you more info though.

Good luck.

Cann profile image
Cann

I have not been diagnosed with lupus but have so many of the symptoms. I had 2 miscarriages before having my daughter and threatened to lose her at 8 weeks. Luckily, I had a doctor who felt that I should rest and would not examine me or prescribe anything, just saying that if the baby was deformed he believed I would lose it even if I rested.

It was a difficult pregnancy until around 7 months. She was born naturally with only a navel hernia as a problem.

I wanted more children, but knew it would be difficult to go through another pregnancy like that and having my daughter to look after. Nevertheless, we decided to try when she started school. I was expecting twins though didn't know it until I started losing the second.

I decided I couldn't go through any more heart-ache and my priority was my daughter, whom I found fulfilling and enough to cope with.

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