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Sticky Blood-Hughes Syndrome Support
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Advice needed

I have recently had 3 miscarriages, after the first 2 i was tested and found to have APS. I was not put on any meds at that time, i then fell pregnant in August with twins and put on Ecotrin and Clexane...... i was also put on utrogestan to try and sustain the pregnancy..... i lost the babies last week and now they have taken me off all meds... I have heard some horror stories of people that have developed life threatening blood clots just from a simple IV line, shouldn't I be on ecotrin at least??

9 Replies

Hi there, I am so sorry for your losses, I hope you have friends and family around to help you through this difficult time. Where are you located? This will help myself and others help you further. In the mean time, here is the charity website: Please have a really good read through it, as there are treatment guidelines, blood tests and symptoms and a list of specialists in the UK with full expertise regarding Hughes Syndrome/APS: hughes-syndrome.org/



Thank you MaryF, I live is South Africa, Johannesburg. I am going to have a good read through the charity website now as i dont know much about APS, thank you


Here you are papers and names in South Africa: mobile.wiredspace.wits.ac.z...


I don't know how valid this link is, I have just done a search for you, as we do have other members in your area: prodder.org.za/civicrm/cont...

and more names: sajog.org.za/index.php/SAJO...

I hope this helps.



Hi there,

First of all I want to tell you that I am so sorry for the loss of your twins!

I totally agree with the very good advices you have already got from MaryF.

This is an illness underdianosed and not known by so many doctors. Therefore it is important to get an APS-specialist that understands what you talk of and know the symptoms and the treatment.

I should have said welcome to this site. We all have APS here and you may come back to us whenever you like.

Best wishes to you from Kerstin in Stockholm


So sorry to hear of your loss --- You have been given some very good advise from two very great people on this site-- we are here if needed hope to see you back on this site ------ C & J


Thank you all so so much, I feel extremely over whelmed and sad that i have to live with this, even more so that the medication used while i was pregnant didn't seem to work. Now i feel like i am stuck deciding whether to try again and risk loosing another pregnancy or just to forget having another baby?!?!

Sorry for sounding so negative, i just can't get to grips with any of this.

Thanks for being there :)

Roxanne xxx


I'm so sorry that you have had to go through this. I live in Gaborone & can recommend Dr Du Plooy at the Donald Gordon Medical Centre as a great rheumatologist. I don't have any recommendations for specialist gynaes but maybe Dr Du Plooy would. Has your current gynae done investigations into what might have caused your latest miscarriage? Keep well xx


I am so very sorry for your losses. I myself am undergoing IVF the past 4 years, and though I have never miscarried, I was diagnosed with APS following a bloodclot/broken ankle last year. We are thinking perhaps that is why I have never gotten an embryo to implant successfully but who knows, really. My reproductive endocrinologist now has me on 40 mg lovenox daily and one full dose adult aspirin while I take 4 mg/day estradiol in prep for embryo thaw and transfer (from a donor egg). Closer to the transfer I will also be put on Crinone - which is progesterone, for support and will continue that and the estradiol 6 weeks after a positive pregnancy test. I am no expert, but from what I have read on here for those that succeeded having healthy babies...they needed to start thinners and hormonal support very, very early after conception, (or maybe even slightly before?) It would vary of course for me since in my case the embryo is already intact...but perhaps you can ask about getting treated in advance or earlier in the pregnancy? The good thing is you can get pregnant! This is more than half the battle for many ...eventually with the right treatment and the right timing, there is no reason not to think that one of the pregnancies will stick for you! You'll be in my prayers.


I can't imagine your frustration, I pray that this will be the baby (babies) that stick :) .

My gut feel is that we waited too long to start meds, My Gynae insisted that we wait to see heartbeats.... a week later i lost them :( The next time i think i will start meds as soon as i get a positive..... I have some meds left over from this so I will be ready :)

I was also put on progesterone every pregnancy, maybe one day soon we will get it right. If not then I am blessed with a beautiful 6 year old daughter that I need to concentrate on and enjoy :)

Its a battle and constant worry having APS, but we are lucky to be alive and have so much to be grateful for...

I truly hope that you get all you wished for and more




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