page consists of basic questions asked by new patients,
for more in-depth questions and answers please look
at: In depth
questions on Antiphospholipid Syndrome (APLS) or APS
Antiphospholipid antibody is an
auto-antibody made against one's own normal body chemicals. Lupus patients as a rule have many autoantibodies, the best known of which are the antinuclear antibodies (ANA) made against the centre parts of the body's
cells and anti-DNA antibodies, which react with the major chemical contained in the nuclei. Antiphospholipid antibodies are similar in that they react with a type of fat (lipid) that contains phosphate. The outside
walls of all the body's cells are made of phospholipids. This type of fat is not the type which is responsible for weight. (Having antiphospholipid antibodies will not help you lose weight.) Cardiolipin is merely one of
several normal body phospholipids. Historically, anticardiolipin antibody was the first antiphospholipid antibody described; but because antibodies can be found against many other phospholipids, the general term
antiphospholipid antibody is now preferred to the more historical term, anticardiolipin antibody. There is probably no difference between anticardiolipin antibody and antibodies to the other phospholipids.
may use slightly different definitions to diagnose Antiphospholipid Syndrome (APS or APLS). In general, you need to have a positive blood test for either the Lupus Anticoagulant or the Anticardiolipin Antibody. In addition to the blood tests you must also have one of the following criteria:
1) A history of blood clots, thrombosis
Low Platelet Count, thrombocytopenia
3) Recurrent pregnancy loss
There may also be skin, heart and nervous system abnormalities.
Actual questions asked by patients
What are antiphospholipid antibodies?
There are several kinds of antiphospholipid
antibodies. The most widely measured are the lupus anticoagulant and anticardiolipin antibody. These antibodies react with phospholipid, a type of fat molecule that is part of the normal cell membrane. Lupus
anticoagulant and anticardiolipin antibody are closely related, but are not the same antibody. This means that someone can have one and not the other. There are other antiphospholipid antibodies, but they are not
a more recent explanation of the antibody and the theory
of it's activity in the disease CLICK
How common are antiphospholipid antibodies?
As with other autoantibodies (antibodies directed against one's self) in lupus, the antiphospholipid antibodies can come and go in any
individual patient. It turns out that there are many ways to measure these antibodies, and different methods may not always give the same result. For example, in different studies, 8 to 65 percent of people with lupus
have the lupus anticoagulant, and 25 to 61 percent have anticardiolipin antibody. These antibodies can also be found in people who do not have lupus. For example, two percent of young women have anticardiolipin
antibody. These antibodies were first discovered in people who have lupus, but it is not necessary to have lupus to have these antibodies. In fact, in most studies, over 50% of people with these antibodies do not have
lupus. We do not understand why a person's immune system begins to manufacture these antibodies.
Why are antiphospholipid antibodies important?
The presence of both the lupus anticoagulant and
anticardiolipin antibody is increased in lupus patients who have had thrombotic (blood clotting) complications such as deep venous thrombosis ("thrombophlebitis"), stroke, gangrene, and heart attack. Studies
suggest that the presence of these antibodies may also increase the future risk of thrombotic events. Anticardiolipin antibody has been found to be increased in pregnant women with lupus who have had miscarriages. The
combination of thrombotic problems, miscarriages, and a low platelet count has been called the "Antiphospholipid Antibody Syndrome." It is not necessary to have lupus to have the Antiphospholipid Antibody
Syndrome. It is important for doctors to realize this and to check people who have had a stroke, heart attack, or miscarriage for no known reason to see if they have these antibodies.
interfere with the normal function of blood vessels, both by causing narrowing and irregularity of the vessel (called "vasculopathy"), and by causing clots in the vessel (called "thrombosis"). These
blood vessel problems can then lead to complications such as stroke, heart attack, and miscarriage.
How do doctors test for antiphospholipid antibodies?
Blood tests are used to identify antiphospholipid
antibodies. Specialized tests which measure blood clotting (coagulation tests) are used to find the lupus anticoagulant. The activated partial thromboplastin time (aPTT) is a widely available blood clotting test that is
often used. If the aPTT is normal, more sensitive coagulation tests should be done to test for the lupus anticoagulant. These more sensitive tests include the modified Russell viper venom time (RVVT), the platelet
neutralization procedure (PNP), and the kaolin clotting time (KCT). If the clotting test is prolonged (the number of seconds that it takes the blood to clot is longer), the physician will suspect that the lupus
anticoagulant is present. This is confusing, because even though the blood takes longer to clot in the test tube, the blood actually clots more easily in the person's body.
The anticardiolipin antibody is measured in
an ELISA test. There are many classes of anticardiolipin antibody (IgG, IgM, IgA). It is possible to test for all of these antibody classes at once or the physician may wish to test for each one separately. The IgG type
of anticardiolipin antibody is the type that is most often associated with complications. Sometimes, there are technical difficulties with the IgM test, making it more difficult to interpret the results of this test.
Some lupus patients with very high IgM anticardiolipin antibody have a problem called hemolytic anemia, in which their immune system attacks their red blood cells.
Since antiphospholipid antibodies can come and
go, how often should doctors check for them in lupus patients?
There are no current recommendations on the timing of repeat tests. Certainly the antiphospholipid antibodies should be checked in people who have
had thrombotic problems, miscarriages, or low platelet counts.
What is the treatment for a person who has antiphospholipid antibodies?
If a person has the lupus anticoagulant or anticardiolipin antibody,
but has never had a thrombotic complication, treatment is not currently recommended. If a patient has had a thrombotic complication and has these antibodies, treatment may depend on where the clot (thrombosis) occurred.
In general, treatment consists of "thinning" the blood to prevent future clots, using either aspirin or warfarin (Coumadin).
How successful is treatment in people who have had a thrombosis (clot) in
association with these antibodies?
Some individuals who had initially been treated with aspirin have had a second episode of thrombosis and have then been treated with warfarin (Coumadin). Many of these patients
had a second (or recurrent) episode of thrombosis while on warfarin. However, treatment with warfarin appears to be more successful overall. The length of time that this treatment is necessary is unclear. Most physicians recommend
life-long treatment to prevent future episodes of thrombosis.
If a woman has antiphospholipid antibodies and is pregnant, how is it treated?
If the woman has antiphospholipid antibodies and is pregnant for
the first time, or has had normal pregnancies in the past, no treatment may be advised. However, if the woman has had miscarriages in the past, several different treatment regimens are available, including aspirin,
Prednisone, and/or subcutaneous shots of a blood thinner called Heparin. Pregnancies in women with antiphospholipid antibodies are considered to be "high risk pregnancies."
It is necessary for the
obstetrician or gynecologist to work closely with the rheumatologist or other physician who evaluates a woman with miscarriages for antiphospholipid antibodies. Miscarriages, especially early in pregnancy, are not rare.
Women who have had multiple miscarriages should be checked to see if they have antiphospholipid antibodies as part of an overall obstetric evaluation for causes of miscarriage.
How successful is treatment in
people with lupus who have had a miscarriage in association with these antibodies?
The treatment of pregnant women with antiphospholipid antibodies to prevent a possible miscarriage is not well understood at the
current time. Some women are helped by combinations of aspirin, Prednisone, and/or subcutaneous heparin, whereas other women continue to have miscarriages even when they are taking these medications. Subcutaneous
heparin is less likely than Prednisone to cause diabetes and an increase in blood pressure during pregnancy. Other treatments, including plasmapheresis or intravenous gammaglobulin, may be considered in individual cases.
How successful is the
long term anti-coagulant treatment in
giving relief from the
symptoms of Antiphospholipid Syndrome (APS or APLS)?
recent survey of patients symptoms, and in the many
discussions with patients it seems that the answer to
this question is not going to be an easy one. Many of
the patients suffer from short-term memory loss, this
has been said to ease when the correct therapeutic anti-coagulation
level is reached. This is proving to happen in only
a minority of cases, and most patients refer to this
getting worse. It appears that the treatment can (in
some cases) halt the progression of the memory loss
symptoms by reducing the interruptions in the blood supply
to the brain. With other symptoms that involve clotting
there is a distinct reduction of clot related problems
such as DVT's, PE's and heart attacks, but not in the
main causes of the clots and bleeds. With the destructive antibodies
still active and able to cause damage to any living
cell in the body it is still possible for many
of the symptoms to remain unchanged and for some to
Some questions show
the anxiety felt due to the lack of understanding
or poor explanations
How do we control these constant headaches when we are already taking aspirin,
paracetamol and anything else? Are the constant headaches "a sign" that perhaps
I should be taking warfarin as opposed to Aspirin?
The answer to this
has been well documented by doctors Hughes and Khamashta
and has been shared with many at conferences and in
books. This patients doctor (or doctors) should have
sufficient access to information, with which to be able
to advise this patient.
The 'stock' reply that
is perpetuated in the medical profession is "With
treatment and anti-coagulation medications this symptom
is one that will disappear on reaching the therapeutic
level of medication". This reply is most apt to
the severe head pains (not headaches) that are part
of the syndrome symptoms. Many patients find that although
there are a number of symptoms that still increase in
severity or even appear while on medications, but the
head pains are the ones that disappear first, and only
return when the medication drops below their therapeutic
I have had two positive blood tests at ten weeks intervals, I have fatigue, very heavy menses, migraines and joint pain and I have had one miscarriage. My GP referred me to a consultant Rheumatologist who specialises in Connective tissue diseases, as I have a family history of heart attacks and Antiphospholipid Syndrome (APS or APLS). The consultant
interviewed me for ten minutes (no examination) and told me I could not possibly have Antiphospholipid Syndrome (APS or APLS) as I had two full term pregnancies, and dischargedme from his care. Is this true?
The total lack of care and knowledge this doctor displays are not uncommon in the medical field. he is wrong, and there has never been any paper published that would confirm his idiotic reasoning. Having looked further into your medical history (which was available to this consultant), I can see that you had your children early in your adult life and that both were in your teens. All research into this disease shows that the disease needs a 'trigger'
to turn on the antibody activity against our own bodies. This trigger could be an infection (viral or bacterial), trauma or even stress. If your 'trigger' started the disease after your two full-term pregnancies then they will have no bearing upon the levels of disease you now have. My suggestion would be to find at least two articles on Antiphospholipid Syndrome (APS or APLS) which show it to need a trigger and
use them, and this reply, to get your GP to find another rheumatologist in a better hospital. You should at least be on a baby Aspirineach day and other drugs to combat the heavy blood loss from your periods.
A question that
is of extreme importance if you have to attend an
Independant Medical Examination (IME). This again shows
the extreme stress of trying to deal with this disease.
This Monday I am scheduled to
attend an Independent (Yeah, right!!) Medical
Exam in Toronto. I know I e-mailed you some of what the letter from the
doctor read like (saying I must wear underwear, no recording devices, I
cannot write anything down while I am in the room etc. etc.).
letter also explains that a female 'secretary' will be in the room with me
while I am being examined. Now, what I am thinking is this.....say this
doctor does something wrong, or is rough, or rude, whatever, or the report
comes back and it's totally bogus and this case of mine ends up going to
court and he has to get up on the stand it is his license on the line but a
'secretary' doesn't have a license right? So, she has nothing to lose by
lying for him, am I making sense? Or just sounding off the wall...lol?
called the Ontario College of Physicians and asked them about some of the
stipulations and they said as long as my ins. co. is paying for this exam
then the doctor performing it can make up the guidelines. I felt like saying
"Okay, can he ask me to come to his house at 3 o'clock in the morning for a
12 hour exam?" Anyway, do you know off-hand if there is any 'rule'
so-to-speak that when a male doctor is examining a female patient what 'type'
of person is to be present? I just have kind of an issue with him having a
secretary in the room. It's almost like he can just bring in any
joe-blow off the street to listen
to my personal history and view me in a
This question posed
a number of dilemmas that we have all felt, and on which
I was not qualified to formulate a reply. The IME is
to be held in Toronto Canada, so I asked a top US attorney
with experience in (and success) claims of unfair and
non-impartial IME's in the Toronto courts, dealing mostly
with Fibromyalgia patients. I have placed his reply
on a separate page to enable it to be printed off for
your own personal use (all rights reserved i.e. Bernard A. Kansky, Esq. © Copyright 2003 and may not be
further reproduced or published without my express written consent.).
A. Kansky's reply in full
Page forms part of www.apls.tk, the information site on ANTIPHOSPHOLIPID SYNDROME (APS or ANTIPHOSPHOLIPID SYNDROME (APLS))
Medical Keywords: systemic antiphospholipid antibody syndrome, Antiphospholipid, Antiphospholipid Antibody Syndrome, Antiphospholipid Syndrome, APS, APLS, Hughes
Syndrome, Sticky Blood, Clotting Disorder, Stroke, TIA, PE, death, Antiphospholipid Antibody Syndrome, Antiphospholipid Syndrome, APS, APLS,
Hughes Syndrome, Sticky Blood, Clotting Disorder, Stroke, TIA, PE, death