Hughes syndrome??

[isabella2015]

I think I made a mistake joining the community here, I don't understand what H.S. Is exactly but I don't think I have it!! I've discovered I have PMR and that covers one of my ailments!! Please can someone give me a description - I feel like an imposter! Thank you so much!!

[Ozchick]

Put simply it's "sticky blood" in that someone who has it needs to be on anticoagulants for life. It does come with a host of symptoms that often make no sense and often takes a long time to get diagnosed. If you go to the Hughes charity site they have some good info. If you are under the care of a Rheumy they can sort it out (but not always-as some have never heard of it!!)

[isabella2015 in reply to Ozchick]

Thankyou so much I am on warfarin, ha! Perhaps I do have it after all, will look more into it Thankyou again

[Ozchick]

It's also known as Lupus anticoagulant or Antiphospholipid syndrome. (Not really anything to do with Lupus but does sometimes get overlap symptoms with auto immune diseases) Are you on warfarin because of a clot somewhere?

[MaryF Administrator]

Hi, here are the symptoms, also the related diseases and the blood tests which need to be done if you suspect you have this. Often other family members will have autoimmune diseases, a history of miscarriages or stillbirths and also thyroid conditions. hughes-syndrome.org/about-h...

hughes-syndrome.org/about-h...

hughes-syndrome.org/about-h...

Also there is quite often a history of early heart attacks or strokes at a young age.

MaryF

[isabella2015]

Mary F. Thank you I do have quite afew of the symptoms and will ask my doctor! some hope he will investigate it!!

[Lure2]

Hi Isabella,

Have you read "Sticky Blood Explained" by Kay Thackray? I have it in pocket here in Stockholm. She writes about a lot of the symptoms but not the latest oral drugs as it is written a couple of years ago but we still have the same symptoms today. It is a very good book.

Best wishes from Kerstin in Stockholm

[isabella2015]

APsnotFab no they havent, and I dont know what APS stands for, I have artrial fibullation and just diagnosed (two months )ago with polymyalgia

[isabella2015 in reply to isabella2015]

APsnotFab, I havent been told I have sticky blood. and I dont know what "APS" is, I have atrial fibullation and two months ago was diagnosed with polymyalgia. Thankyou for helping.xx