Sticky Blood-Hughes Syndrome Support
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Anyone not on any treatment?

I was diagnosed with Hughes after my miscarriages and have just had a successful pregnancies on 5000 units of fragmin and 150mg aspirin. Post partum I was on 5000 units fragmin for 6 weeks. I have been to the haematologist and they have said that as I have no other symptoms and no history of blood clots they don't want me to take anything going forward and have discharged me but if I get any symptoms to go back. I am not looking for medical advise just if anyone else is no nothing and if u think I Gould get a second opinion. X

9 Replies

If it was me, I would just for reassurance if nothing else.


I had the same experience. I was diagnosed 17 years ago after miscarriage at 22 weeks then had a baby at 29 weeks on asprin then a full term on asprin and fragmin. I was told after that I didn't need any other treatment as its just when pregnant. At the start of this year my symptoms got quite bad and I done some research and spoke to people on this site. I got referred to haemotologist and he said I should have been on warfarin since beginning. I have been on it for 4 months and I have noticed a difference in some of the symptoms but im still unstable. I would definitely get a second opinion. As I have learnt from everyone on this site you need to do as much research as possible and stand your ground. Sorry its such a long post. I hope you get all the advice you need and congratulations on your baby xxx


It seems that there are people who only have symptoms with pregnancy however since the discovery of APS was in the 80's and a lot of women present in their later years - like me because we didn't know about it then, I have to wonder if there are those who have symptoms during pregnancy who have no symptoms after but then go on to develop them later in life. These people could avoid problems by just taking Aspirin daily as I'm sure I could have done.

Get your second pinion but from one of the recommended specialists.



I agree with my colleague, APsnotFab.

Please get a second opinion.

Best wishes.



I also agree with what APsnotFab and Manofmendip have said!

Best wishes from Kerstin in Stockholm


I also had pregnancy problems but have not had a stroke, clot or other related issue. I would echo what the others have said and push to get an answer about what you should do. I regularly see a rheumatologist as I have Sjogrens Syndrome as well and she has suggested that I take 75mg aspirin every day because of APS.


Hi I decide to take Aspirin twice a day not on medical advice but on account of my medical history and also my symptoms at the time, I then found with the correct medical advice that I was doing the right thing. You do need to be monitored especially if new symptoms come along. One GP was quite scornful about my symptoms and at that stage has not picked up the other four conditions I had! Luckily I have pretty good care these days and the Aspirin made a huge difference to me. MaryF


Hi. I've seen many, many doctors lately from GPs to gastroenterologists (polyp) to gynaes (adenomyosis) to internal medicine specialist. I cant get to see the top specialists in Barcelona unless I pay privately (no cash at the moment!)None of them think treatment is needed in my case. I was diagnosed with APS in 1998 after multiple miscarriages, ectopic pregnancy. Subsequent treatment with heparin gave me two successful pregnancies. I have had no thrombotic events but do get mild Raynauds.

I am constantly being reassured that my APS is only pregnancy-related and that it has no bearing on my adenomyosis. My GP prescribed tranexamic acid for excessive bleeding but I'm afraid to take it as it's a fibrinolytic!

Anyway, I did a lot of research and found a recent paper on the latest research about Aps and treatment and it echoed what the docs here are saying. I'll try to find it again and post the link.

Just one thing; any thoughts about aps and heavy menstrual bleeding, clotting (and pain)?


Thanks everyone you have all just confirmed what I thought and will get a second opinion. Janeingirona I would really be interestednin reading that article. I have always had heavy periods but no clotting until after my miscarriages. I don't know what they will be like after my pregnancy.


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