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Hughes Syndrome APS Forum

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Sucess stories needed x

xxkellywxx profile image
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Hey all, I've lost 3 babies and would like to try again a year since the last one, I have been diagnosed with hughes so they will try me on heparin injections along with low dose aspirin, I have two questions... Will the chances of me having a healthy pregnancy increase with this method, and secondly.. With my last pregnancy I've only been taking low dose aspirin but still lost it, why does heparin make a difference if they both do the same thing, thank you xxxx

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xxkellywxx
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MaryF profile image
MaryFAdministrator

Hi there, I am lucky I did not actually lose any if you look on my profile you will be able to see why. However I had Fragmin during pregnancy a from of heparin... basically aspirin makes the platelets slippery and less likely to clump together and the heparin on top of this thins the blood. You will have much more success with this method. Lots of ladies will come on underneath my answer and probably tell you their successes. I wish you all the best, and I am glad that some common sense is being applied by your team in view of your diagnosis. All the best Mary F x

sharonap profile image
sharonap

I have known about 5 ladies from my local miscarriage support group who after a number of miscarriages have had successful pregnancies using heparin and asprin. Iam sure there are a few on here with personal strories.

Good luck xx

emmaj profile image
emmaj

You should ask for high dose 5mg folic acid also - anyone with possible placenta issues should be on this. They should scan you regularly,and check for any growth issues, and monitor you very closely towards the end. The success chance with aspirin and heparin goes up to 80% with anticoagulation - I had it with both of my babies and I was fine - I wish you all the luck and well done for having the balls to try again - I hope you have your much longed for little bundle this time next year xx

glovebox profile image
glovebox

I lost 7 babies before having a successful pregnancy which was my twin girls. I was on aspirin and heparin. Having the heparin does increase the success rate of the pregnancy. I do hope it all goes well for you. Good luck xxxx

slowcyclist profile image
slowcyclist

Hi Kelly

It is much more successful with both but you will probably need close monitoring and may need to be prepared to have the baby a little early. Be prepared for regular dopplers to check the blood flow through the placenta to the baby. I was monitored closely having had several miscarriages and pre-eclampsia first full term pregnancy, was on aspirin and clexane, but with my last two live pregnancies both children had to be delivered at 36 weeks, because they had stopped growing. This is all some time ago so things may have changed but I have 3 healthy children now, the eldest being 19! It's a roller coaster but really worth it! Good luck, and don't lose hope!

starships profile image
starships

I have also had three miscarriages and was on 75mg of aspirin with my last pregnancy which I last at 12 weeks (although baby stopped at 10.5 weeks)

I saw Dr Raj Rai privately at St Mary's on 2nd Jan this year and he said without treatment you have approx 10% chance of a live birth, with aspirin it increases to 40% and with both aspirin and heparin it increases to 70-80%. Heparin works differently to aspirin as it binds to the lupus anticoagulant and stops it from making the blood clot plus it has an additional benefit over aspirin in that it also shields the placenta from our own bodies attack. He gave me the much needed support and hope that I really needed in order to hopefully try again this year. He has recommended extra monitoring and the risk of miscarriage does decrease once over the 12 week mark and then decreases further with every passing week till after 20 weeks the risk is approx 6% with 'normal' ladies at 3% which are much better statistics for me to get my head around.

I will also need to be on 150mg aspirin as the TEG test I had showed that even on 75mg I was still clotting too much. It is important not to start the aspirin until a positive pregnancy test as having aspirin before can actually increase the chance of miscarriage.

I hope to have a positive story to share in the next couple of years.

Wishing you all the very best of luck xx

Hilda_G profile image
Hilda_G

I was diagnosed with Hughes before trying to start a family, so am very lucky not to have had a miscarriage for that reason. I was put on aspirin and Fragmin for both my pregnancies, had fortnightly scans for growth and to check blood flow through the cord. Both my children were induced at around 38/39 weeks in order to be able to better manage anticoagulation through labour. My children are now 12 and 14 :-)

Rebecca_H profile image
Rebecca_H

Hi, i know how scared & sad you must be feeling. I had a successful pregnancy feb 2012 after a 2nd trimester loss in 2011. I took aspirin 3 months before conceiving & then heparin injections from the first day of a positive pregnancy test aswell as extra vitamins & cyclogest until 28weeks. You should be monitored extremely closely, I had scans every 2 weeks- 6weeks until 24weeks & then every 4 weeks plus consultant appointments & normal midwife appointments. I felt like I was at hospital every week for 8 months & that was reassuring & I now have a beautiful daughter. Good luck & message me if you want to.

dorsetbutterfly profile image
dorsetbutterfly

A friend of mine who I recently discovered also has APS took baby aspirin through hers and they put a stitch in the cervix to help. She now has a lovely 15 year old

I have a gorgeous 10 year old daughter but was only diagnosed 5 years ago. I was bleeding for the first 3 months and the doctor sent me for a scan because he wasn't sure if I was even definitely pregnant. I gather I have a problem with my cervix whereby it is amazing i got pregnant at all so it may have something to do with that.

Knowing now that I have this disorder and am permanently on 300mg aspirin a day, I consider myself very very fortunate that I have my daughter and it seems she is a little miracle, a million to one chance of success that still worked.

I really hope that you too have your own little miracle.

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