Lupus Anticoagulant! "CURIOUS"

[snugzz]

I was looking to chat with someone who has Lupus anticoagulant. I have recently lost my leg after having 6 amputations due to the Lupus attacking my vascular system, and had a triple bypass. What are your symptoms?

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked!

The lupus anticoagulant test confuses both patients and doctors. This is not a test for lupus, but a complicated blood clotting test.

Known medically as the antiphospholipid syndrome and more colloquially as ‘sticky blood’, Hughes syndrome (named after Dr Graham RV Hughes who first noticed this condition in 1983)

is an autoimmune disease which affects the blood and its ability to clot. An overactive immune system produces antiphospholipid antibodies (aPL) which cause the blood to clot too quickly both in veins and arteries.

The clotting can affect any vein, artery or organ in the body and the consequences can include potentially fatal conditions such as heart attacks, strokes, and DVT. In pregnancy, the antibodies can cause miscarriage, pre-eclampsia, small babies, early deliveries and stillbirth.

As blood flows through the entire body, Hughes syndrome can present a wide variety of symptoms, not all of them as serious as stroke or heart attack.

People from all ages, including children can have Hughes syndrome, but it tends to mainly affect the 20-50 year old age group and women more so than men. In the UK alone, it is estimated that Hughes syndrome affects 1 in 200 people.

There are two main types of Hughes syndrome:

Primary antiphospholipid syndrome - the condition is not linked to any other disease and develops in isolation.

Secondary antiphospholipid syndrome - the condition develops along with another autoimmune disorder, usually lupus.

The good news is that Hughes syndrome is both potentially preventable and treatable if recognised in time; however, as the condition is relatively new in medical terms, much more research is needed until we can learn more about the causes, effects and treatments. One thing we do know is that early diagnosis of Hughes syndrome is crucial for patients, and the Hughes Syndrome Foundation aims to raise awareness amongst both the medical profession and the general public to achieve earlier diagnosis and the best treatment for patients.

Currently, there is a bewildering array of names for Hughes syndrome including the antiphospholipid syndrome (APS, APLA or APLS); primary antiphospholipid syndrome (PAPS), the antiphospholipid antibody syndrome (AAS); the lupus anticoagulant syndrome (LAS); the antiphospholipid lupus anticoagulant syndrome (APLAS); the anticardiolipin antibody syndrome (ACAS) and ‘sticky blood’. It is also known as Hughes syndrome to acknowledge the doctor who was leading the London team who first described it in 1983. St Thomas' Hospital, London is the centre of excellence for this condition in the UK.

Hughes/antiphospholipid syndrome can cause both low-grade symptoms and potentially fatal conditions as a result of blood clots.

SYMPTOMS

In pregnancy, Hughes/antiphospholipid syndrome is the most common, potentially treatable cause of recurrent miscarriage, and is also associated with other complications such as pre-eclampsia, premature birth and stillbirth.

Some people are affected by symptoms more than others, while others may have the antiphospholipid antibodies (aPL) but do not develop any blood clots and/or have pregnancy complications. As of yet, we simply don’t know the reason why these anomalies exist because so much research still needs to be carried out.

The typical low-grade symptoms of Hughes/antiphospholipid syndrome are:

headache and migraine

memory problems

dizziness and balance difficulties

visual disturbances

blotchy skin (livedo reticularis)

arthralgia

fatigue

The common acute conditions caused by Hughes/antiphospholipid syndrome are:

thrombosis – DVT

strokes and mini-strokes (Transient Ischaemic Attacks)

heart attacks

pulmonary embolism (blood clot on the lung)

As Hughes/antiphospholipid syndrome is a blood disorder and blood flows throughout the entire body, nearly any organ can be affected. Consequently, the brain, eyes, ears, lungs, heart, kidneys, liver, bowel, skin, nails, bones and joints can potentially all be affected to varying degrees.

The brain is particularly susceptible in Hughes/antiphospholipid syndrome patients, as the ‘sticky blood’ can impair circulation and limit oxygen which can result in a variety of low-grade neurological symptoms.

Remember - it is NOT necessary to have all the symptoms to be diagnosed with Hughes/antiphospholipid syndrome.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

With good wishes,

Ros

[snugzz in reply to lupus-support1]

Thank you for the info you sent to me. Yes this is secondary (AS). I have had since 1999, and have had many complications! I just lost my mother a few months ago due to the same disease. SCARED

[lupus-support1 Administrator in reply to snugzz]

I am very sorry to read about your mother. Please accept my sincere condolences for your loss. This must be a very difficult time for you, grieving for your mother and scared because you also have AS.

My first question is whether you are being seen by a specialist in this area. As I mentioned, St Thomas' Hospital, which was where Dr Graham RV Hughes worked is the centre of excellence.

Professor Graham RV Hughes is at the London Bridge Hospital, which is unfortunately private but if this is possible, I would recommend seeing him as not only is he the expert in this area, but he is a wonderful, caring doctor, someone to whom you can talk.

londonbridgehospital.com/LB...

londonbridgehospital.com/LB...

I am wondering whether you feel you need to talk about what has happend - are you receiving any counselling.

If you would like to talk more you can email me: roz [at] [lupus-support] [dot] [org] [dot] [uk] pr at the LuPUS Message Board if you register.

With good wishes,

Ros

[snugzz in reply to lupus-support1]

Ros thank you. I actually live in Las Vegas NV and I see a hematologist named Paul Michael at CCCN, also I see a vascular doc named Peter Vajtai. Between these two amazing men they have saved my life multiple times literally!! I am not in counseling but I definitely need it. I do feel the need to talk about it. Thank you again Holly

[lupus-support1 Administrator]

Dear Holly,

I'm happy to have been of some help.

With good wishes,

Ros