Sticky Blood-Hughes Syndrome Support
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Hi Everyone

Ive just got home after a week in hospital following a stroke secondary to hughes syndrome. Im still feeling very poorly and its left me walking with two sticks. Im already on clexane so whats next is there anything else or do i just take my chances til a stroke or PE (of which ive had 5 ) kills me. Im sorry to moan but any help/advise would be useful. I am being re-refered to our local rheumatologist to see if he will refer me to st thomas's. Sorry for the terrible spelling Im still having trouble recognising the keys take care


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Hi there I am so sorry you are feeling so bad, hopefully as a matter of urgency your GP will refer you there, private message me if you are stuck writing letters of anything, as it is clear that perhaps your GP could refer you directly to speed things up a bit, or specialists off our list local to you. Keep on as best you can, and come on here for support whenever you need it. MaryF


Hi there.

Your GP should be able to refer you directly to St. Thomas' under the NHS 'Chose & Book' scheme, as Mary has suggested. Please do ask them about it.

Otherwise, many on here have gone, privately, to the London Lupus Centre at London Bridge Hospital and have seen prof Hughes or one of his team there.

Best wishes and regards.



I hope you get on the mend very soon. Worrying time for you. The lupus unit is now based at Guys site. I asked my gp to refer me there. I typed out the details for him and he referred me through the book and choose system. It required some persistence as prof K who I asked for did not appear on the choose and book list. Gp service had to call prof k's secretary.

I have seen him twice at guys via NHS and once at the London Bridge hospital privately.

Best wishes Sue

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Lupus unit is at guys now however try to get referred to professor dcruz or khamashta these are the best round and have knowledge in Hughes so good luck



I had my stroke (primary APS) 4.5 years ago now. Prior to that, was undiagnosed. It gets better, very slowly and at time imperceptibly but over time you will notice gradual improvement. There is a necessary period of readjustment ( the word ' recovery' is a total misnomer) and you have it go through a period of grieving for a life that's gone. But in terms of medical support once I got my dx people improved in their approach towards me. I think having had a thrombotic event they will put you on warfarin; certainly my heamo won't consider anything else for me with the history I have. I hope you find people to help you answer your questions. Make sure your employer, should yo be able to work, is fully apprised of your situation via your go. Good luck. It does improve.


I am on clexane twice a day as ive had 5 PEs and they could not get me stable on warfrin


Yes. I does get better. But you got a diagnosis! Yeah! That's more then half the battle.



Sorry to hear that you are having such a hard time of it. Touch wood my chances of another stroke or multiple TIAs were much reduced following the discovery of, and closure of, a hole in the heart. (PFO)

I had previously experienced more investigations of my heart and lungs that I can recall but it wasn't until some 35 years after my first PEs that a stroke doctor thought to check whether I had a hole in the heart - after multiple TIAs on one day. Others had been in with cameras etc before but not detected it. It is thought 20% of the population have such defects but it doesn't cause most people a problem. It does allow clots forming in the heart to get out and do damage though so please, invite your doctor to consider having it checked out if there might be any chance of you being like me.

I haven't had a TIA since, though I do have a high target INR and self-test every other day. Seems to be working for me.

Best of luck





Hi Margaret - So sorry to hear about your latest set back. Ive been there so do know how you feel. The fact that you are on LMW heparin now rather than on warfarin I do think will probably be better for you. You don't say if that change is just because of this last stroke or if you were on it before?

Im on Fragmin once a day as like you I could not get a stable INR and was allergic to the warfarin.

I do hope this makes a difference to you, Ive been just over 4 years since my stroke. I could do nothing after mine and you do feel really down, but slowly slowly things will improve. In 6 months you won't know yourself.

My advice to you whilst your mobility is not so good is use your mind as much as you can. Your brain has a huge capacity to remap the area that has been damaged. There is a site called:

which is brain games. You can do so much without actually joining. Do crosswords or anything that stretches you and makes you use your brain. Expect to be tired and take a rest if you need to as your brain will get tired. My brain would actually buzz after I had worked it and actually it still does if I concentrate on something a lot.

If you can ask your GP to refer you for neurophysio. Whilst you wait for it to come through get a friend or relative to take you to a Hydrotherapy or ask your GP to refer you for that too. If there is a Hydrotherapy pool near you go to it and just practise your balance exercises walking up and down the pool - you can fall over in the pool but it doesn't matter :-D and it will give you confidence and keep your muscles working. It helped me a lot. Practise standing on one foot and then change to the other. Apart from anything else this will get you out of the house. These are all practical things that will help you. You are most definitely not just sitting waiting for the next stroke or PE!!

Above all try not to get depressed, you have us here for support. xx

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