Sticky Blood-Hughes Syndrome Support

APS at 27 !!!

Hi there,,

Firstly a big thank you to all who post regularly here....its very informative and helps me to learn and be prepared for the days to come,,,,

I have PCOD since pubuerty, 2 DVTs and 1 PE event in last 2 years...diagnosed with APS..put on lifelong Warfarin dose...all at 27...when life starts for most girls my age,,,,mine seems to have...screeched to a halt....its been 2 years of this....and now dealing with the worst...immensely heavy bleeding during periods (they come and go as per their whim)...does anyone on warf face this problem??? Hoping for some suggestions and advice...

Take care u all :)

8 Replies

Hi There

Definitely not great :( I was diagnosed at 29 & have been on warfarin for 12 years. I too was having heavy bleeding and had a Mirena IUD inserted only last year. I wished I had one years ago. To be honest the first month was not fun but now I only have a small amount of spotting and can go a few months with nothing at all. I hope you find a solution that suits you. Take care :)


Hey Deedee, thanks for the reply..dont know much about the Mirena IUD..expensive? painful? any problems in case planning to have a family in some years ?? will certainly try to find out..thanks for sharing !! :)


Hi there, many on here have had success with the Mirena coil, so please think of looking into this, and please also regularly get your iron ferritin levels checked, is important alongside the Hughes Syndrome/APS to keep an eye on those levels alongside, your B12 and also vitamin D and of course your thyroid. It would be very easy for your Iron and B12 to become low and make you feel worse. MaryF


Hi MaryF,

First of all, let me say i have read many of your posts/comments and they are hugely helpful,,,this time too !! Thanks :)

I have borderline thyroid and take a tablet daily for that,,i was told that thyoids and APS do not influence each other...another one of those myths busted i suppose..


Professor Hughes regularly talks about the trio of diseases - Hughes Syndrome, Sjogrens and Thyroid! In fact today at the Hughes Day Patient Conference he spoke about them again, the film of this afternoon's patient's day will be on Youtube soon. MaryF

1 like

Thanks a ton for letting me know..will surely be on the lookout for the video...


Hi there - I also have polycystic ovary syndrome and am on lifelong anticoagulants after DVT/PE and APS diagnosis. I also get heavy bleeding - I went to A&E once because I was convinced something was wrong but they were not concerned. Apparently the threshold for concern kicking in is if you need to change a pad every hour... I agree with Mary that you should ensure your iron levels are checked if you are bleeding heavily on a regular basis. Since I have switched to rivaroxaban, I tend to bleed less - but because of the PCOS and its unpredictable nature, it is difficult to know whether this is a result of the change in anticoagulant or just a coincidence. I would say that if you remain concerned then go back to the doctor until you are satisfied. Doctors do not know everything, that is why there are specialists! Ask to be referred to a specialist if you are not convinced or feel as though you are being fobbed off. Take care.


Hello there,,

We seem to have very similar problems it seems,,i guess next time i am down and out , i will think of u and others who are also going through the same thing :)

My doc did try putting me on Xarelto (rivaroxaban), as there are no regular blood tests needed,,,BUT...on the 4th day...bleeding was sooo heavy,,had to be hospitalised for a week,,,it took 3 clexane shots a day for a few days to stop no Xarelto..for me...everrrrrrr :(


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