I am desperately hoping you can give me some general guidance on Hughes Syndrome in pregnancy.

[Boodle]

In brief I have had two miscarriages and have now tested positive for Lupus Anticoagulant. I am now pregnant again and being treated with 75mg of Aspirin and 40mg of Clexane daily for this condition, with the addition of Prednisolone re the miscarriage issues. My concerns relate to when in general other pregnant ladies treatment stops during their pregnancy for this condition, and what the reason is for stopping at that point. I am so concerned that if I stop too early, I will have another miscarriage. I have yet to find a doctor with any real knowledge of the condition, and therefore someone who can give me a guide to stopping these medications. Is it worth me paying to see Dr Hughes? I am having a very early scan at an NHS early pregnancy unit next week, but feel the Consultant might not know much about this condition. I want to feel prepared for this meeting and any and all help will be most gratefully received.

[MaryF Administrator]

Hi there, firstly hello, and you are on the right track, it would be useful to know where you are located. There may be others near you who have seen a team during pregnancy skilled in this, there are some dotted around the UK, and yes it is useful to see Professor Hughes, but let us also see if we can help you further. If you have a user friendly GP/Consultant they may wish to telephone for advise at St Thomas; at this unit:

guysandstthomas.nhs.uk/our-...

and of course there are man medical papers attached to the Hughes Syndrome Foundation website. I have had three successful pregnancies... although I was lucky enough to live down the road from St Thomas' at the time.

You will find, that fairly soon lots of ladies will come on here and help you with more detail, but again will ask you where you are... as we can help more readily then. Congrats.. you are well on the way to things being safer with the medication and an actual diagnosis..believe me sometimes that is over half the battle, the diagnosis in the first place. All the best Mary F x

[Suzypawz]

Hi, I can feel your worry & concern.

I myself cannot give you much advice concerning miscarriages as I had my 2 boys before I started having my problems....but I am here to give you advice any way I can or just to point you in the right direction & to just be there.

Mary has given you some good advice above & getting your gp to at least to contact St. Thomas would be a great start.

I hope that someone soon will come on here that has been through their pregnances whilst having Hughes to give you support & advice seeing as they have or are experiencing the same as you.

Congratulations by the way & good luck with the rest of your pregnancy, please let us know how you get on, all the best, Sue xx

[Boodle]

Hi and thanks for your replies. I live on the Hampshire / Sussex border. Unfortunately my GP is hopeless and unhelpful (not unusual I suspect with a Hughes diagnosis). A complicating factor here is that this is an IVF baby, and she thinks I should continue to go private for any Hughes treatment / medication required. I totally disagree, my argument being that now pregnant, I should be treated on the NHS as any other Hughes Syndrome preganancy should be. This battle started yesterday, and I instigated the early pregnancy unit visit in the hope of getting a chance to speak to the Consultant Obstetrician who might be more knowledgable, in addition to getting an early scan. Just don't know which way to turn and want to be prepared so if she says something I don't agree with, I can counter her argument. Thanks.

[Hidden]

When pregnant with my third child i was prescribed Fragmin injections twice a day through until six weeks post delivery. I had a fantastic Consultant at Worthing Hospital (West Sussex) who has sadly retired but i would press for more support for you and your baby if you feel it is lacking. Best wishes.

[Lucky67]

Probably better to get to your appointment and speak to the consultant - who can contact st. Thomas' consultants/refer you to them if nec...

For my pregnancies (and I now test negative and have done for years) I was treated as if I was positive ...although it was a bigger fight for the second as (as knowledge has moved forward) and I was arguably misdiagnosed in the first place...

I had 75mg aspirin daily and starting from one then going onto 2 fragmin injections daily.

You also need frequent growth scans in the later stages - for my first these were weekly for last 6 weeks or so (if the baby stops growing as expected you might be developing clots in the placenta/umbilical cord - baby isn't getting nutrients/oxygen required - and this is can lead to late miscarriage/still birth)...

I was to be induced for first child 2 -3 days before her due date -and had to stop the aspirin a week or so before (can't remember exactly now) and fragmin 2 days before (she decided to appear on her accord on day she was to be induced) - for second not to be induced but same with aspirin and stop fragmin at first signs of impending labour

(If you don't stop the fragmin early enough it isn't too bad - but you can't have an epidural. Aspirin is - it can cause bleeding complications)

Starting up fragmin again straight after birth for 6 weeks (as Lissylou says) - which I was told is a very high risk time for maternal clots...(Aspirin was maybe a day - as soon as post birth bleeding had slowed)

Maybe you should remind your GP that this isn't 'just' your baby's health at risk but your own - pregnancy greatly increases the risk of clots... it could seen as self induced risk - but then again the NHS doesn't refuse to treat junkies, alcoholics, smokers, obese people etc etc ....

Good Luck and fight your corner....

[Boodle]

Thanks to everyone who replied. I have a scan at the local early pregnancy unit on Wednesday and a meeting with my GP next Friday to follow up. I want to go in with as much info as possible about when I should stop the med's and why. If anyone else has any info or experiences, I would love to hear from you. Thank you.

[LucyLocket in reply to Boodle]

Hello there . . . congratulations on your pregnancy. I just thought I would let you know what happened to me with my pregnancy - obviously we are all different and as the others have said, I think you need to speak to someone who really knows about this area.

I was referred to the Recurrent Miscarriage Clinic at St Mary's, Paddington after having 2 miscarriages followed by unexplained in fertility AND test results which showed 'sticky blood' and possible lupus. It took me a long time to actually fall pregnant again and I thought it would never happen - in fact we'd started the process of IVF/ICSI but did not complete the cycle as our chances of success were so low and we had just received all the forms to start the process to adopt from China when I got a positive test result.

I was only put on aspirin - 150mg daily - as soon as I discovered I was pregnant and I also received scans every couple of weeks at St Mary's (I really believe that this also helped me a great deal) - I had a miscarriage scare at 9 weeks when I started to bleed and really thought I'd lost the baby but she hung on in there! I was told to stop taking the aspirin at 34 weeks to avoid excessive blood loss at birth. I had my daughter at 38 weeks by emergency caesarean - she was breech and I started to get possible pre-eclampsia.

One thing which I discovered afterwards could have been a huge problem and was not checked up on during pregnancy was that I was (and am) anti-Ro antibody positive which causes foetal heartblock (which can be associated with miscarriage and stillbirth) and neonatal lupus - I would suggest you are checked for this antibody. They gynae docs should have checked the baby's heartbeat through pregnancy but after I was discharged from St Mary's at 12 weeks into local care I was hardly seen by the midwife who was always off sick - I think I was seen about twice before I ended hospitalised at 30 weeks with blood pressure issues.

Please make a fuss and get checked out by someone who knows about the effects of these auto-immune conditions on pregnancy. I never did find out whether my daughter has been affected by my auto-immune problems . . . I must ask the rheumatologist at my next appointment whether I should get this checked out!

Best of luck and I hope everything goes smoothly for you.

[Hidden]

Nice to talk to you earlier. As promised, I will be sending you the new website info on pregnancy plus extra leaflets and flyers for your GP. To reiterate, heparin is now stopped at 12 weeks if you have had early miscarriages only but it can be extended to 20 weeks or longer if you have lost babies after 12 weeks. I hope you manage to convey your worries to the early pregnancy unit team and they let you stay on longer than 12 weeks consider the IVF treatment. As discussed, I wouldn't hold your breath for a referral out of your area. Wishing you all the best