Hughes Syndrome ? Antiphospholoid syndrome - any advice or experiences ?

[Duritzfan]

Hi

I have had ten mc's so far .. I have successfuly had two beautiful children but the third continues to elude me ...
Yesterday I finally got seen by a miscarriage specialist who told me that I have Hughes Syndrome - which I have suspected for a long time now ..
I got a positive pg test at the beginning of the week and am now not sure if Im pleased I know the reason I lost all those other pregnancies - or scared about the outcome of this pregnancy ..

Anyone who has done Heparin treatment through pregnancy - or taken aspirin - please let me know how it went for you ..

Thanks x

am currently 37w+6 after 3 consecutive miscarriages. I was diagnosed as having lupus anticoagulant antibodies and suspected antiphosphiliod syndrome. Today is my last day on heparin and aspirin. Having to go off it now to prepare for the actual birth (please god let it be soon!).

The injections are a pain at first but you get used to them pretty quickly. i dont even bruise any more. I found injecting into tummy fat was much less painful than thigh fat.

THe good news for you is that with the diagnosis and the use of heparin/asprin your chances of a successful pregnancy go from 30% to 90% once you get past 12 weeks. Before 12 weeks with the treatment your odds are normalised to the same as a non affected women (75% roughly).

Good luck and i hope it works out for you!

oh i meant to add, if you are in london, try and get a referral to St Mary's recurrent miscarriage clinic in Paddington. THey are amazing at managing this disorder and are the leading authority on the subject world wide.

If you cant get to them, get Professor Regan's book "Miscarriage - what every woman needs to know". It goes a very long way to explaining how the syndrome works, best treatments and outcomes. I saw Raj Rai at St Marys and firmly believe he is the reason i have kept this baby at all.

Hi - thank you ..
I have that book..I actually suffered a dvt a year ago ( despite being slim, mid thirties and a non smoker )and it was at that point that I began to really research this..I was positive I had Hughes syndrome and just had to wait for the damn hospital to test me..

Good to hear you are at 37 weeks . wont be long now .. Is this your first ?

I had heparin before, with the dvt and have a daughter who has daily injections so am not worried at all about the heparin..just need to hang on until my scan at 6 weeks to get started ..am already on aspirin though ..

If this pregnancy does not continue then I will be getting referred to Lesely Regan's clinic..

Your doctor is clealry a lot more optimitsic that mine though .. I was told 10% chance of a positive outcome with Hughes..and only rising to 60% with heparin..
a huge increase still but not as good as your doctor told you - lets hope your doctor is right !!

yep, this is my first child. Cant wait to finally meet her!

my doc was Raj Rai at St Mary's. He works with Lesley Regan as part of her team. so far as i am concerned he is a god (as is Lesley Regan for that matter).

We ended up seeing him privately through BUPA as the NHS referral was taking forever and my old GP was a first class dickhead. Mr Rai was brilliant. He wrote a long diagnosis and treatment outline for me to take to the EPU when i next got pregnant. The NHS consultant was more than happy to follow his recommendations with a little prompting from me.

What dosage asprin are you on? Mr Rai advised me to take 150mg as he had more clinical success at that dosage than with the traditional 75-81mg dosage.

Fingers crossed for you!

aww Sugarplum -- I'll bet you cant wait..

Kypros Nicolaides at Kings looked after me with my ds ...and I would do anything for that man !! I know how you feel...

Hmm.. so 150mg huh ? and thats considered safe ? even along with heparin ?

Might up my dose then ....
Thank you ...
I am so happy for you that it has worked out - being a mum is the best thing in the world I think...x

I guess it depends how strongly you clot but Mr Rai was quite clear that 150mg was perfectly safe even with the heparin. I just buy a bunch of tesco's 16p 300mg asprin and cut the tabs in half.

I have heard of Prof Nicolaides. He is supposed by very good too. It is amazing how much regard we have for the docs who take us seriously.

Fingers crossed it works out for both of us!

Hi Duritzfan,
I have Lupus (SLE) and antiphospholipid syndrome. Only 1 miscarriage back in '05 and 2 boys born since then. Because of pre-eclampsia with the 1st son (born electively at 33 weeks)I was put on cleaxane (a type of heparin) for the 2nd (successful) pregnancy and my current pregnancy - I am at 21 weeks now.
So, these last 2 pregnancies I have started injections from 4 weeks, as soon as I had a positive test. Why are you having to wait until 6 weeks? I am also on Aspirin 81mg, I take this all the time not just when I am pregnant.
Also, sugarplum - I stay on my injections & aspirin through the birth until 6 weeks after. I am under the team at Tommies.
Lots of luck to both of you

I have to wait til they see a heartbeat apparently .. I will be on heparin til six weeks after too ..
I had PE with my dd too .. a few weeks of bed rest in hospital and then a cs six weeks early ..
Hmmm .. would you try and start the heparin now if you were me ? I don't think the cons will budge tho ...

Meant to say too .. They lost the results of my test for lupus - they are running it again ..

it is my understanding that most consultants wont start the heparin earlier than after the 6 week scan incase the pregnancy is ectopic.

They can visualize the gestational sac quite early on via ultrasound but that doesn't always mean that the pregnancy has actually situated in the uterus. they cant be sure it is not ectopic until they see a heartbeat/yolk sac at 6-8weeks.

If the pregnancy is ectopic then i understand they are concerned that the heparin will increase the bleeding in the event that the ectopic ruptures.

That said, what are the odds of having an ectopic pregnancy? i have read 2% if you have never had one before.

I would have liked to start the heparin earlier too and would have been happy to play off the risk of a complicated ectopic against the chance of early miscarriage but i didnt know the rationale so didn't argue against it. Cant hurt to ask about it though.

also meant to add, i have to go back on the injections and aspirin after the birth for 6 weeks too.

Also had APLS, had aspirin from positive PG test and clexane (another form of heparin) from 7 weeks after viable scan. They offered scanat 6 weeks but I wanted to be sure there would be something there when they looked iykwim! Also had massive dose of folic acid and special doppler scans to check placenta working. Had clexane right up to day waters broke and started it again 24 hours after birth.

DC3 is now a few months old and a lovely fat thing Pregnancy was trouble free but sadly not worry free.

There is a miscarriage association leaflet on Hughes syndrome that you may find useful, good luck I hope everything goes really well for you.

Lupus diagnosis is a real problem when getting travel insurance (most will not give you a year cover) and health insurance. Bupa will give life insurance. Not sure how Hughes effects this? but before you get a positive it might be worth trying to sort these out - I should have done it all in my carefree 20's!
I personally would ask again to start heparin early, just from the stats. sugarplum came out with at start of thread.
Also with this pregancy and previous one, I will have growth scans every 4 weeks (from 28) with doppler studies to check blood flow. I agree with Owlingate, constant worry and DH who supports but doesn't realise that the Q "How's the baby" does not actually have an answer until the kicks start.
Duritz, when is scan? soon?

thank you so much all of you for your responses -its so good to hear the positive stories..please god I might be able to offer reassurance to someone else in the future..

I am going to talk to hubby and maybe call the epu and see if we can start heparin earlier..I have never had an ectopic .. fall pg perfectly - just cant hang onto them...
I will settle for trouble free pregnancy ..Have long given up on a stressfree one ! Even my first successful one was terrifying !

Makes me rather sick when I have a sil who pops them out like peas even when she doesnt want to and then delivers with hour long labours at home ...

grrr ... !

Anyway ..scan is next tuesday ... am frightened to move until then really - just resting, taking progesterone and aspirin and being very careful..

hmm.. will investigate the Lupus / insurance issue ..thanks for the heads up...

Thank you again ladies. I will let you know if I get to the scan ...x