Sticky Blood-Hughes Syndrome Support

is it really life-threatening??

You know, when diagnosed i was told APS was life threatening and i would need medications & monitoring from now on...well if this is so, why do i only get repeats of the prescriptions & nothing else. No visits to hospital, consultants, blood tests nothing....

Was diagnosed nearly two years ago now and to my memory have only ever seen a rhuematologist once..i know i suffer memory loss from time to time, but i am damn sure i havent forgotten that i have seen anyone about my condition ...maybe i dreamed it all ...who knows .....

I feel a fraud, i dont feel i have condition really ...i cant have can i or surely i would be seeing someone to do with it :-S ?????????

14 Replies

Be thankful that you don't feel like you have it, that's my best advice.

You may be lucky and never develop symptoms and pain, etc.

What led to your diagnosis?


kristina- god how i miss you--santa


Hi lollierai,

Welcome to the group. My first question is who diagnoised you? Are you on Waferin?

Do not feel a fraud we have memebers that have APS but have very limites symptoms from slight memeory loss to slight Joint pain we all diffrent. I am loath to give you an answer till i know the above answers as follow up can depend on the doc, mediaction and how your symptoms are.

Speak soon



I remember when i first saw Dr Hughes his words to me were this illness is life shortening and that i am never going to recover as there is far to much damage already done as i had to wait 17 years for a D.X class yourself as very lucky and to enjoy your life as best as you can good luck babe x


I think the thing this site shows is that everyone is different - for me who was diagnosed 12 years ago after a PE all it involved was 6 months on warfarin and being aware that having a child might be hard. However 2 years ago I had 6 clots in brain and am now recovering and on warfarin - so I suppose it can be life threatening. However I wonder why taffydaffy said it would shorten your life - as once you get treatment you should remain healthy - altho there seem to be many strands, I see a haemotologist and never a rhematologist.


Difficult to comment without knowing what your symptoms are and what drugs you have on repeat. You only mention memory loss but I think you must have more than this as you are obviously very frustrated with your care. If you explain why you feeling so let down and concerned, I am sure there are many who can advise you and give you support you need.

I wish you well.


I feel for you if you have been left hanging? :(

Are you on Warfarin? if so you have to go every month usually to get your inr checked, if you are not on it , perhaps they are waiting for more symptoms to arise?? until they want to put you on warfarin?

I know because they had discovered I had it before I had anything too 'serious' they were questioning wether I should have been put on warfarin straight away!! thankfully they agreed to as I do get horrid symptoms when my inr goes below to me thats enough of a warning!!

Do you get any 'symptoms'? how was it found that you have aps?

If you have questions still at the end of our advice/help you should talk to your gp, as we can only give you advice on our own experiences, as we are not medical.

All the best, Sue. x


Hi there please be thankful you're like this i have lost 3 babies, had TIA's. pulmonary embolism and if you turn me upside down i rattle with all the drugs, i also have to inject clexane too as i'm allergic to warfarin. I also have systemic lupus. I do hope you don't get any worse and stay virtually symptom free. I have been blessed with my precious son who is two, PS i'm 45 now :-)


as others have asked, what sort of medication are you on? At the very least you should be on a daily aspirin.

Is this syndrome 'life threatning' short answer is YES. Any blood clot is potentially fatal, obviously certain types more so than others but any could kill.

Preventative medication is a far better option rather than playing russion roulette for a clot to happen.



Thankyou all for the responses :) they in themselves have helped.

In answer to the questions that have been medical issues are:-

Arthritis (neck, spine, hip, left knee & both elbows & hands)

Spinal Stenosis (affecting my lower back)

PVD (left leg)

Policemans foot (lol) cant remember the medical term, lots of pain when putting weight on left heel.



Migraines (almost daily)

and a problem with the antibodies in my blood which mean should i ever need a transfusion it has to be an exact match ........recently i have been suffering some memory problems and feelin really tired and achey

I am taking ventolin & becatide for the asthma, diclofenic, tramadol,sumivistatin, omiparazole, amyltriptaline & low dose asprin on a daily basis for the stenosis and APS and i am beging my menopause (lucky me :S)

I do have 5 children (lucky or mad, not sure which lol) but had 6 miscarraiges in the process.

The miscarraiges were just accepted by me and my GPs as bad luck..hmmm in hindsight who knows.... had bad headaches for a few years in chilhood/teenage years, then nothing till i hit 30 and migraines hit with a APS was diagnosed by my GP after a year of visits to do with discolouration and pain in my lower left leg and ankle, was given antibiotics, sent to physio and to see cardio vascular surgeon who did various scans tests etc...was fitted with a stent in my lower abdomen(left side) but have another collapse in same aretary and waiting treatment.

I do count myself lucky that i am not sufferering as badly as many of you and others i have read about....but i really dont know if i should be worried or not...i find i dont know what to think or feel about it all...i kinda swing from being worried that i have something that could cause so many things, to, i am fine and just being a nuerotic hypercondriac.

sorry this is a bit long i hope it answers some of the questions asked, and again thankyou for your response cos at least now i know there are some people to talk to about it ....thankyou x


You should look into this and go back to the Dr that diagnosed you. If you have APS, you need to be on blood thinners and need to get your INR checked frequently....check into it for your well-being.


I see my Rheumatologist every 3 months....she takes my blood; and and one of the tests is to measure "something" that is a marker for ASP....When I 1st saw her the marker was has now remained below 10 for 2 years (since I began to take Aspirin as a blood thinner) so far I'm "brain fog" has lifted......of course I live in the US so I don't know if the "markers" used are the same as the UK


thankyou to everyone...having read these and talks with my better half have decided that we need to be more active in asking questions when visiting the gp next month...find out why if i have this am i not being monitored etc.....time for me to take this seriously....oh and be thankful that compared to some of you , symptom free....


Hi lollierie

I've been offline for a while so had not read your story.

I really think a rheumy or haematologist should be monitoring this. Don't think you are having it easy at all hon, just hiding the pain well, maybe wrong, just reading between the lines I guess. Another brave lady. Sending big hugs. Pm me if you need anything.

Take care gentle hugs sheena xxxxxx :-) :-) :-)


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