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Hello I am a mum to a 17 year old called Cassandra who has been poorly since 2005. We have been told she has an immunological problem but as yet no official diagonosis she is currently on azathioprine and hydrocloxyquininne. She has regular bloods taken by the rheumatolgist at Great Ormond street and just recently has had a lupus anticoagulant postive result (previously all been negative). Could someone please advise me does this mean lupus definitley. Because she has looked on the internet and frightened herself. Any help or advise would be greatly appreciated. Thank you
 

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Hello there and welcome,

The lupus anti-coagulant test is, in fact, badly named as it is not a test for lupus at all but for something called APS or Hughe's syndrome which is a blood clotting disorder. That is a condition which can exist on it's own or alongside other auto-immune diseases such as lupus (about 30% of lupus patients also have APS). Even having the positive test doesn't necessarily mean that your daughter has APS as for an official diagnosis she must also have a "clotting incident".

For most people APS is easily treated and not a major problem at all. Many people simply take one baby aspirin (between 75 and 100mg) a day.

As your daughter is already taking plaquenil and azathioprine she is obviously being treated as would a lupus or MCTD patient even without positive bloods. She is obviously being well followed up and that's how they have picked up the positive lupus anti-coagulant test.

It is very important to treat the internet with caution. Even reading here on the boards can be quite frightening but it is very important to know that most of the people who write here are either "newly diagnosed" "not yet diagnosed" or the rarer, more severely affected people. The boards are not necessarily representative of the "lupus" population as a whole.

I hope that helps a little, don't hesitate to ask any questions you may have there are loads of knowledgeable people here willing to help.

Katharine
 

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Welcome to the forum

I am sorry that Cassandra has been frightened by the appearance of this so called and misnamed " lupus anticoagulant". The term refers to autoantibodies called anti phospholipids which were first identified in lupus patients, but don't necessarily mean the person has lupus. More people have them who dont have lupus. About one third of those with lupus also have these antiphospholipid antibodies.

However, Cassandra is apparently being treated already for an autoimmune connective tissue disease of some sort. Lupus is one of this group of diseases.
If there is some doubt about exactly which disease she has, the appearance of these antibodies might tend to confirm the diagnosis but the important thing is to get treated as necessary to control the disease and relieve the symptoms whatever they are. The presence of these antibodies doesn't necessarily mean she is somehow worse off than she already is.

When somebody says they have lupus the first question has to be "How does it affect you?", because there are many possible symptoms and many degrees of severity, depending on what parts of the body are affected and how severely.

It is reckoned that only one third of people with these antibodies actually suffer from them

Cassandra's doctors would have to determine how significant the antibodies are in her case, how they are affecting her right now, if at all. People can have the antibodies without suffering any ill effects from them.

"Lupus anti coagulant" is also a misnomer because it suggests that the antibodies can cause bleeding but the opposite is true - they can cause clotting events, thrombosis, miscarriage, strokes of various sorts and a whole host of other less dramatic symptoms such as "brain fog" - difficulties with memory and thought processes - to name but one.

The trouble with looking things up on line is that information focuses on the worse cases and in our anxiety we in turn focus on the worse cases. In a way this forum also deals with worse cases because all those people who are leading pretty normal lives with their symptoms well controled don't usually post here. However it is a very good source of experienced information and usually reassurance.
It is rather important to have a good understanding of how your lupus is affecting you and how it might affect you, what to look out for. Nothing is worse than ungrounded fears. Information empowers & helps to feel in control of the disease and to get the best out of one's doctors by developing a good dialogue with them. I hope her doctors are ready to talk and explain. Try to develop the habit of asking questions and expressing fears.

If the doctors decide that these antibodies are causing trouble they will treat with blood thinners of various sorts depending on what they judge necessary. It might be nothing more than a low dose aspirin.

If there are symptoms associated with these antibodies, the condition is called APS, short for antiphospholipid syndrome. In the UK it is often called Hughes Syndrome in honour of the lupus specialist who first identified the syndrome and understood the possible significance. Sometimes it's called
'sticky blood'.

I expect Cassandra will be moving out of pediatric care very soon. Will she transfer to St Thomas or another lupus specialist centre?

She is very welcome to post here herself ~ we have several members her age including some who have APS. It is comforting to know that other people are going through similar experiences and get encouragement and inspiration to lead fullfilled lives despite the problems posed by disease.

Please keep in touch and let us know how she gets on and of course don't hesitate to ask for any help we can give you. :)

All the very best
Clare
 

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Hello Julie, I have Lupus and APs, so does my 17 year old Imogen.
If we can help at all please let us know. We both go to St. Thomas' but I used to go to GOSH with my Son for other things.

x Lola
 

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Discussion Starter #5
Thank you for your reply I dont know if this is use ful but her clotting was normal, and her IgM was raised, ANA positive If you know what this means could you please explain.
 

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Dear Julie, I am totally brain dead at the moment. Have been having a real flare and doubt how well I could explain. Rather than confuse you I am sure someone who is currently feeling a bit more with it will help you at the moment.
How is your Daughter coping? Mine was quite depressed and ill,but she generally copes better now. She was only finally diagnosed with Lupus and APS in January and was pretty ill. Don't know if she will manage College this year. Last year she only managed 3 weeks!
What is Cassandra doing?
x Lola
 

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Hello again :)

The doctors have to interpret the significance of blood tests in the light of clinical findings and other test results- symptoms and examination.
However the ANA is positive in almost all cases of lupus so it counts towrds an SLE diagnosis although it occurs in other connective tissue diseases ( disease like lupus ) and in non lupus related diseases too.

There are various sorts of IgM antibodies - was it IgM anticardiolipins?
If clotting was normal it doesn't sound as if there is anything to be concerned about although I dont know what test you are referring to.
I am curious to know what her diagnosis is at present. She is already being treated for lupus or a very similar disease.

You might find the information section of this site interesting about the basics diagnosis and tests and so on.

All the best
Clare
 
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