Introducing myself: I have just joined after... - LUPUS UK

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Introducing myself

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I have just joined after reading Colette Barrere's article in Lupus UK News and Views winter 2016.

I have had Hughes Syndrome (APS) for over 30 years and am following the clinical trials of Rivaroxaban with interest, oh to be free of warfarin and it's constraints! I'd love to know what other think.

Looking forward to being a member as I only know one other person with Lupus and APS.

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Hi LInnieOAP,

Welcome to the forum! I'm really glad that Colette's article has encouraged you to join, I'm sure she'll be delighted to see that.

We look forward to your contributions to the conversations :) Please let me know if you ever need anything.

Welcome to you LinnieOAP, yes it was a great article and made me wish that I lived in the Cambridge area as so much seems to go on.

I have SLE, APS, Raynauds, Fibromyalgia and MGUS, but am lucky as only on aspirin for APS not awful Warfarin.

Very glad you joined the forum where you'll find lots of information and great support.

Colette reminded me of one of our excellent contributors both from photo and history, if it is the same lady, she's an inspiration.


Hi what are your symptoms of Hughes disease i have read things on the Internet and convinced myself i might have it but think it's best to talk to someone with it , I am going to see my gp next week about this . I have had SLE for 14 years , had brain tumour surgery in 2008 and 3 months later had a massive seizure which was caused by a blood clot on my brain , was on warfarin for 18 months but then it was stopped even though the clot was still there , in 2011 I had another large clot in my groin whilst in hospital recovering from meningitis so now on warfarin for life . I have been worrying lately about my memory problems and I believe Hugh's can cause this , noone has ever said I have it warfarin clinic just have on their screen recurrent blood clots, any advice would be appreciated x

πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹hello Linnie

Am so glad you're joining our wonderful forum! What more can I say, having said so much in my article πŸ˜†...except welcome + am looking forward to learning from you about life with APS & your thoughts on treatments old & new. 30 years of experience count for A LOT...coming with your beautiful smile, this is exactly the sort of encouragement many new patients really truly madly deeply are seeking

πŸ€πŸ€πŸ€πŸ€ coco

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