Sticky Blood-Hughes Syndrome Support

Hi so confused - anyone else out there that this has happened to -

Diagnosed with APS after a two week stay in hospital and follow on Consultantation with my Consultant - Back again for a further 6 week check up but really confused and fed up - am on Warfrid - INR at 2.3 would have through I would be getting better - or do yo u get better have had an awful two weeks and sometimes feel I am imagining it - started with a pain in the calf of my leg which woke me at night for about 4 days - then that went and ended up with the same size pain just spot about the size of 50p between my lungs very painful to lie down then that went - had a fantastic day on Friday could have challanged the world - then on Saturday - could feel myself draining - getting floaters in my eyes which I have not had in a while - on Sunday morning woke to pink spots on the ceiling and around the room and pressure on the head - was out yesterday afternoon - and got one massive gush like a little ball from the base of my neck through my temple and across the front of my head, total dissieness and nocked of my feet and vision in right eye - all only lasted few seconds - but took the wind out of me for the rest of the day as pressure on my head was bad - none of the medication seemed to lift it - again to-day pressure on right side of head which is usual - but dont want my Consultant to think I am being paranoid when I go to him tomorrow - does this happen anyone else or am I overacting.


7 Replies

Hi there, you are NOT being paranoid, it is an awful lot to take in, receiving this news and being so unwell.. you need to go straight back to the hospital, and phone the consultant. I am glad you have at least had the diagnosis...some go through this without it. Let me know what else we can do, but make that call, and if not ring their secretary, and failing that go straight on down xx M x


Hi hun, never mind what your doc' may feel or say....go & get checked!!

I have learned this through experience now, dont worry about what others may think or say you have to have a new view think of yourself first to get the answers we deserve, it could mean anything the effects you are having including tia.....but you really do need to have it looked into.

If you feel you can wait till tomorrow ok....but if you start to get these symptoms again go today to see someone......dont ever think you are being paronoid....or 'your bringing it on your self', I think we have all been told this at some point in 'our cruisade of Hughes!!' but I'm telling you now....only you know your own body & if you feel somethings wrong .....get seen.

Let us know how you get on, I'm glad you were one of the ones to be found with this earlier on rather than later.....but just look after yourself xx


Changes in vision could be a TIA and is an emergency situation. I would be at the emergency room immediatley.


Hi Rebecca

I agree with Suzypawz and JimQ that what you are experiencing could well be TIAs. An INR of 2.3 would not be considered theraputic in most APS patients and more typically an INR of between 3.5 to 4.0 would be recommended.

I think you should go and get checked out without delay. Ask to be referred to St. Thomas's or book a private consultation with prof Hughes at The London Lupus Centre at London Bridge Hospital.

Good luck and best wishes.



Thank you all so much for your replies.

I had may appointment this a.m. with my Consultant and my Daughter came with me as I feel two people hear clearer than 1.

I made my notes before I went which is extremely helpful -

I asked all my questions first as I think I have been in Limbo for the past 4 months getting my head around this.

He explained it very clearly and plainly to me -

a) My antilipids are higher than they were when I was first diagnosed.

b) My repeat bloods show the Antilipids are higher again now (not good)

c) The Platelets on my Brain (3) are still there so there is no change there -

the positive they have not increased

d) I have got to accept that ths illness cannot be looked at on a daily basis and just because I have one or two good days does not mean I am getting better - I have to accept it as a long term illness for now.

e) There are numerous types of Migraines - I just though Migraine was the same for everyone and people with APS could show many different types of Migraine that can also be frightening.

I am a lot clearer now - I am very lucky it was discovered when it was, whilst I am seriously Ill I will now be more positive and not judge it on a daily basis which I was - getting INR done every two weeks and Antilipid Bloods and Brain Scan again in 4 months -

Happier now and feel that I am accepting what I have - also have a very good consultant who understands the condition - and good friends who have the same sympthoms and I can turn to on this page. So thank you so much for your responses they are a great help


ahhh..yes me too.. people don't understand you can be a horse running a race and then without warning you are laying flat on your back...

i have the same amount of plaques on my brain that i started with ..a question of maybe a small new one but in the last 3 yrs it hasn't changed.

i have found when my APS count goes high i am out of sorts..confused , vision problems, weak, painful, falling, etc.

when my APS count goes down i am back to normal...

you are not "crazy" you are normal for your condition..


Having read the question and comments. I know im not going mad. Been of sick from worksince easter weekend when i had three t.i.a in four days, then spent a week in hospital, When im well, i look really well and could run a mathron. But it is like turning a lght on and off, im well one minute and very ill the next. Even having coffee with other mums after school drop off and the next thing they need to call a ambulance because i look like i have had a stroke!


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