Sticky Blood-Hughes Syndrome Support
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APS awareness

Hi, I'm relatively new to this site having found it while researching for my recently diagnosed APS. I developed a DVT in my left calf in December 2015 which was diagnosed as a sporting injury (missed on Ultrasound), as I was training hard at the time. I received three shots of Clexane while waiting for the scan, this was then stopped post scan. Following a private scan and DVT diagnosis 6 months later I finally pushed for and got the tests I needed. This site, and now 'The Graham Hughes International Charity' is a great resource.

This morning I was reading a blog on 'my **** app' which has 165 million user (that's not a typo) and there is a story about a fitness trainer with APS following a stroke, (his father also suffered a stroke)! I feel it's encouraging that the message is getting out to so many people...

"What Happens When a Young Trainer Suffers a Stroke?"

Have a great day,


****Edited by Admin****

13 Replies

Hi Razd and welcome!

Where do you live, in which country? Do you have had the diagnose of HS/APS? You talk about a diagnose of a DVT. I see you also write about a diagnose of APS. Did they take the three antibodies for a diagnose of HS/APS and were they positive also?

Did you see a Specialist (a Doctor who is specialized in autoimmun illnesses where you live) as this is very important. Hope you know a little about our sillness and the symptoms. Do you have an anticoagualtion drug already?

Hope you stay with us here.

Best wishes from Kerstin in Stockholm

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Hi Kerstin,

Thanks for your reply. I am in Worcestershire, UK.

To answer your question, yes I have been diagnosed with HS/APS. It was discussed with my Haematologist around June 2016 following final confirmation after a second Ultrasound plus an MRI, that I had been living with a DVT since Dec. 2015 and the blood tests came back a few weeks later. Then obviously, another set of bloods 12 weeks later ....

Lupus anticoagulant - Negative

Anti cardiolipin antibodies - IgG Elevated, IgM Negative

(after additional reading I realise the IgM is not relevant)

Anti B2 glycoprotein-1 - Elevated

My Haematologist does have an interest in coagulation and I know him on a personal and professional level so I feel very comfortable discussing my health and treatment options although I'm sure he won't mind me saying that he is not an auto-immune specialist!

I have also had repeat blood tests in December 2015 and April 2016 partly for renal profile for my treatment, but also repeat APS test which showed the same results although my

Anti B2 glycoprotein-1 was up to 29 U/mL (our lab. normal range being 0 - 7 U/mL)

I have read extensively and last summer went on Rivaroxaban 20mg od.

Somedays I don't feel great and do wonder if I made the right choice when I read on here that Warfarin with higher INR seems to have a positive effect on well-being but my lifestyle also dictates that I can't attend clinic appointments on a regular basis. I realise that the jury is still out on my medication of choice. But having read the data, I do have piece of mind.

I will attach a useful summary published in the Lancet Sept. 2016 by Assistant Professor Rolf T Urbanus. Clinical Chemistry and Haematology in Utrecht.

You may have already come across him and/or the article Kerstin.

The article relates primarily to laboratory parameters comparing Warfarin to Rivaroxaban and while it is an interesting read, and we all want to be protected from future clinical events, what I / we really want to know is how the patient feels.

Apologies if it has been linked on here already.

The Lancet is a peer reviewed journal and Prof. Urbanus has declared no competing interests .....

Best wishes,

Ray, Worcestershire :)


Thanks for your detailed and interesting replies. MaryF


Ray - Thank you for posting the link. The research to which Professor Rolf T Urbanus refers is known as the RAPS trial and you can find it in our Pinned Posts to the top tight of this page or go to this link:

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Interesting read, thank you, Cindy in NJ


Hi Cindy, thanks for your reply. I have attached more bedtime reading to Kirstin's reply.

Best wishes, Ray


Thank you, I wish you good health with the rivaroxiban.


Hi Ray

Welcome to our site and thanks for the compliment.

You don't say much about your HS, if you are on any anticoagulation now that you have a diagnosis?

Thank you for the story about the fitness trainer. As you say its good that articles are being written about the condition that can reach so many people.

Unfortunately, due to the strict HealthUnlocked no advertising rule, I cannot allow the link to your article because the article is being written in and being promoting by an App, which presumably was one of the reasons for the story! Members can google it for themselves if they wish to read it.

You have a great day too!


Hi there APsnotFab .... inspirational name by the way :)

I have been on Rivaroxaban 20mg od. for almost 12 months now.

And like most of us it would seem, learning more about the syndrome on a daily basis.

I'm new to the site, so apologies for breaking the rules on my first visit.

Best wishes, Ray


No problem! We do recommend new users have a read of the Guidelines, also available on the link Ive just posted you above.

As to your personal situation, your Dr has obviously taken into consideration your life style when deciding the best medication for you at the moment. You fit the criteria for Rivaroxaban providing you would have been on and managed well with an INR 2-3. If you had required a higher INR then you may find that your DOAC is not appropriate and you may be forced to look at other options like a return to warfarin or a switch to LMWH which many of us, including myself, manage our HS with.

If you read through this site you will see that we always advocate that newly dx people get full thyroid panels done to include their FT3, FT4 and thyroid antibodies, especially if they are still experiencing symptoms. Also Vit D, Ferritin and B12. It has been found that we tend to be low in these and as you also may have read HS can come in a group with Thyroid and Sjogrens Syndrome or another autoimmune like Lupus or RA.

If you have no gut problems that need to be checked out for Celiac then going on a GF diet can help reduce inflammation as can a maintenance dose of Vit D. Another medication often prescribed as a matter of course because of its anticoagulation effects is Plaquenil. Please also see our information on that in Pinned Posts on the link Ive just shared with you.

I hope things continue to go well for you and don't hesitate to use this Forum for any concerns that you may have.


HI and welcome, I agree with my colleague that we can't having articles linked to an App, as people try all sorts of things to advertise on here. Do please tell us more about your diagnosis of Hughes Syndrome! MaryF


Hi MaryF, thanks for your reply. I have attached a brief summary of my pathway so far in a reply to Lure2 / Kirstin.

And I'm still learning.

Best wishes, Ray

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Hi Ray,

As to your anticoagulation we know that Warfarin has always been very effective to this illness. For me it was my lifesaver.

It can be difficult to handle but if you selftest, as you are obviously not positive to Lupus Anticoagulant (as I am) , it might not be too difficult to keep the INR in range which is very important. Selftesting makes it much easier and if you also have an LMW Heparin (Fragmin)-shot at home to take when the INR is too low you can feel safe. We bleed very seldom from this illness but clot a lot.

That you have to dicide with your Hematologist who you also fortunately know on a personnal and professional level.



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