APS awareness

[RazD]

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,

Ray

****Edited by Admin****

[Lure2]

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

[RazD in reply to Lure2]

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 .....

thelancet.com/journals/lanh...

Best wishes,

Ray, Worcestershire

[MaryF Administrator in reply to RazD]

Thanks for your detailed and interesting replies. MaryF

[Wittycjt]

Interesting read, thank you, Cindy in NJ

[RazD in reply to Wittycjt]

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

Best wishes, Ray

[Wittycjt in reply to RazD]

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

[MaryF Administrator]

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

[RazD in reply to 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

[RazD]

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

[Lure2]

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.

Kerstin