|
 |
||||
 |
|
|
|
|
|
F.A.Q's This 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. Physicians
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: 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 commonly measured. For a more recent explanation of the antibody and the theory of it's activity in the disease CLICK HERE 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. Antiphospholipid 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)? In a 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 become worse. Some questions show the anxiety felt due to the lack of understanding or poor explanations by Doctors 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 level. 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.).Anyway, the 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? I
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 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.). Bernard A. Kansky's reply in full Page forms part of www.apls.tk, the information site on ANTIPHOSPHOLIPID SYNDROME (APS or ANTIPHOSPHOLIPID SYNDROME (APLS))
|
||||