Pregnancy, lupus and hughes syndrome: Im 24, have... - LUPUS UK

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Pregnancy, lupus and hughes syndrome

Lucy86 profile image

Im 24, have no children and have been diagnosed with lupus a few months ago. Has anyone had any experience of pregnancy with lups as I also have hughes syndrome. It worries me

11 Replies

Our West Midlands lupus group had a talk last Sunday by a rheumatologist working in lupus and pregnancy. The news these days is good as long as you follow the advice and attend a special pregnancy clinic. I believe you need to get advice about suitable safe lupus drugs and when your illness is well controlled advice about when to try for a baby. Once you are pregnant you will need very regular check-ups. You will get good advice too about the Hughes syndrome.

No doubt you will get other info from bloggers who have had personal experience.

We have a specialist service in Birmingham where they are very knowledgeable and carry out research.

I too have lupus sle, hughes syndrome, oh and a carrier of becker md, i also had my first baby 6 years ago when i was nearly 41, my pregnancy went fine although my baby was small at 4lb 15oz, i had no problems during pregnancy although did have more check ups than normal. But everything was fine, although unfortunately not knowlingly passed the becker muscular dystrophy down to my son, of which we only found out about 1 year ago. :(

Hi Jude

I have lupus & fibro. No hughes. I have 2 kids 11 & 3. I have just miscarried for the 9th time. They believe due to my lupus causing thyroid antibodies. Yeah it's long & boring. Being pregnant FOR ME is when I'm at my most sick. I get pre eclampsia blar blar. BUT I have read Lupies generally go into remission when pregnant! Everybody will experience pregnancy different. Your docs will def be there for you x

Oops that was meant for Lucy

Hey,

I have lupus and fibro, it was a long road for me to get pregnant, miscarriages and finally fertility treatment. I was only diagnosed between baby 1 and baby 2. My lupus goes into remission when I'm pregnant and I feel the best ever. Both my babies were induced though as they were both born around 4lb, let me reassure you that they are both doing amazingly well. The worse thing is that my youngest is now 5 months old and I am having a major flare up due to the pregnancy, but I have my beautiful children and I would put myself through it allover again for them. Good luck x x

I am 33 and have Lupus and Raynauds. I have two healthy children aged 5 and 9 yrs old. I miscarried my first pregnancy, but everything went fine with my other pregnancies. I was monitored very closely and both babies were small, 6lb and 6lb 3oz. Both are doing great! I still took Hydroxychloroquine when I was pregnant and actually felt better than ever when pregnant. Your body releases a natural steroid when pregnant which is why it is common to hear Lupus patients feel better when pregnant. Good Luck, I am sure you will be fine. :)

I had a little girl when I was 37, and I was diagnosed at 17 and told I prob wouldnt have children.

I was immedialty put on daily fragmin injections which was litlerally a pain! I was monitored to the hills but all went well. I was monitored so closely, it was after the baby I was not so good but I had a clear plan of who would do what should I be ill after she arrived.

Plan everthing to the letter and you'll be fine.

Hi I have 4 children and have had miscarriages but the positive news is that my lupus symptoms lessen greatly when pregnant and stay milder for about the first 4 months. I have also breastfed all of mine. I do have extra scans and blood tests but i still had midwife care mostly with only an extra rheumy and obstetrician. But after all of that i had 3 out of the 4 at home and although pregnancy is a bit harder to get to and to cope with it is worth it.

I think really what I find harder is trying to explain why some days mummy can't play football in the garden or I can't figure out the jolly phonics homework because I just can't remember the word or say the sound. Or even worst the horrible moment when my oldest wanted a friend to come for tea and then the panic of having to have a good day and be the awesome mummy cooking an extra tea not to mention clean house for the parent to see when they come to pick up.

Please don't think i am trying to put you off but remember children last far longer than a pregnancy and the complications of lupus also last longer and when I am really honest with myself I think i am very selfish for having my kids because I don't think that I can always be the mummy they deserve and that the miss out because I can't do. I also feel others think i was selfish and silly for having kids it is very hard.

Good luck if you go ahead and keep us posted.

I have a 5 and 6 year old but didn't know I had Lupus at the time. The preganancies passed without much problem, it was afterwards that I began to break down. Not knowing about the Lupus meant my inability to cope with the hellish fatigue was diagnised as moderate post-natal depression. My body and mind began to break down as i struggled through for several years. Looking back I think the exhaustion of having two young children, a job and a home to run exacerbated the Lupus slowing down my recovery and making life just impossible. Had I have known I wouldn't have gone back to work so soon and probably not have been so hard on myself. Happy to say now things are under control but if I was ever to get pregnant again at least I will be knowledgable about my condition, particularly when the baby arrives. I'm sure with the right treatment pregnancy should pass by smoothly and the rewards are just out of this world!! Good luck.

Hi, I have sle, hughes and raynauds, but when I was pregnant with my daughter 27 years ago I did not know I had sle as I was only diagnosed 3 years ago. I had four miscarriages before I had my daughter and she was a small babe (6lb) but as I did not know I had sle, just coped with the multiple health problems I had afterwards, even leading to a hysterectomy at 24. If sle had been diagnosed things may have been different.

Hi I have Hughes syndrome as well as mild Lupus. Just to let you know that not everyone tests positive to Hughes but still may have it, they haven found a test yet that is perfect, sometimes it's only diagnosed with the symptoms.

I believe the treatment is now an anticoagulant injection ( tiny needle) and Asprin

Good luck, please look at the Hughes web site on here too

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