Main Page

encyclopedia.codeboy.net
 

Antiphospholipid antibody syndrome

Mar. 09, 2003 \n

Table of contents
1 Antiphospholipid Antibody Syndrome
2 Introduction
3 Doctors and Information for APS
4 Bookmarks & Hyperlinks
5 APS History
6 APS The Disease
7 APS is an Autoimmune Disease
8 APS Diagnosis
9 APS Treatment
10 Problems for Women
11 APS Risks
12 Medical Alert
13 Information
14 Coping with APS
15 Other sources for APS Information
16 Comments and Corrections
17 Disclaimer

Antiphospholipid Antibody Syndrome

Also called: Hughes Syndrome or Anticardiolipin Syndrome\nOften abbreviated: APS or APLS. 
Introduction
A brochure written by APS patients.\nThis brochure is a brief summary of APS, its treatment and what you can do for yourself. Because APS has only recently been identified, we need research and publicity to move more quickly to a cure. You can help by a donation to the Hughes Syndrome Foundation.\nYou can donate via credit card at:\nhttp://www.hughes-syndrome.org \nor mail a check payable to, the Hughes Syndrome Foundation, to:\nThe Hughes Syndrome Foundation\nThe Rayne Institute\nSt. Thomas Hospital\nLondon SE1 7EH, England

Doctors and Information for APS

APS is considered a "rare" disease and many doctors, even Thrombosis (clot) Specialists do not test for it soon enough. Many people have seen multiple physicians and specialists before getting the proper diagnosis and treatment. The very best source for treatment seems to be University Medical Schools. Lupus is another Autoimmune disease and some people with Lupus also have APS. Sometimes you can find a very knowledgeable doctor through your local Lupus center. Use the APS Forums as a source of information by telling us your location and asking if anyone can recommend a good doctor in your area. We are here to answer questions. Remember most of us are not medical experts but many of us have had this disease and studied it for years. We have communicated with more APS people than any doctor could possible see in a lifetime. Take what you learn here and bounce it off your doctor. If you don't like his answers then find a good doctor. A doctor that does not want informed patients is not the right doctor for you—move on fast. Please use the forums (URLs are at the end of this brochure). Ask any questions that are bothering you. I am sure someone will answer your questions and many will audit the response. We are not hesitant to correct any misinformation that gets posted. (LOL) This really is a matter of life and death. It is very important that we stick with what little truth is known about APS. Your doctor will manage your treatment. You should always understand the prescribed treatments and be aware of their purpose and necessity.

Bookmarks & Hyperlinks

The Bookmarks section of the APLSUK Forum (address is at the bottom of this brochure) contains many links to APS and related information. Links we highly recommend are: · Email APS Forum on Yahoo (APLSUK)\n http://www.egroups.com/group/APLSUK \n

APS History

The recognition of this disease is quite recent. Dr. Hughes published the first comprehensive articles about APS in 1983. APS is diagnosed by blood tests, often as far as six months apart. A positive result and a clotting incident are considered proof of the disease. There is, however, a grey area of people who test positive but have never had a blood clot. Many women test positive for APS only during pregnancy and need treatment only during pregnancy. APS also may cause a false positive for a syphilis test. Research is being done to find the best method of treating people in this grey area. In the meantime a good communication between doctor and patient is needed in order to decide on the best course of action. \n

APS The Disease

If you have had a blood clot (or any other medical condition caused by a clot--i.e., stroke, heart attack, miscarrriage, etc.) and tested positive for APS, do not ever under any circumstances let a doctor take you off of a blood thinner without seeing a doctor familiar with APS for a second opinion. It is necessary, at times, to change the type of blood thinner when required for surgical or dental procedures as explained later. Some doctors will treat you with blood thinners for six months and then take you off the thinners "to see what happens." I can tell you what will happen— a very high probability that you will have another clot. The clot can easily result in a heart attack or stroke. However, if the disease is treated correctly, life should be near normal and your life expectancy is probably as good as anyone else. \n \n

APS is an Autoimmune Disease

The immune system protects us from germs that invade our body. Autoimmune diseases occur when the immune system attacks normal cells in our body. Arthritis, Lupus, and Diabetes are a few of the 80 or more autoimmune diseases. These diseases can occur at any age. Surprisingly, a much higher percentage of females are affected. Research is being conducted around the world to find causes and cures for these diseases, but in most case neither the cause nor the cure is known. APS may occur in family groups, in association with other autoimmune diseases in a family group, or just be spontaneous with no one else in the family affected. \nAPS affects the blood clotting process. It causes blood clots to form in veins and/or arteries. Blood clots can occur anywhere in your body. Doctor Hughes, an English Doctor, credited with discovering APS, compared the sticky blood "to an engine getting too rich a mix of gas and sputtering along." We do not know what causes APS. No cure is available yet. However, treatment is available to minimize the life threatening aspect of the illness.

APS Diagnosis

APS is diagnosed by blood tests. These tests detect an excess amount for any of several antibodies, a positive result and having a blood clot usually will lead to a diagnosis of APS. \nNote: for details of APS Testing see this WEB page from Oregon Health and Science University.\nhttp://www.ohsu.edu/som-hemonc/handouts/deloughery/apla.shtml

APS Treatment

APS is treated with blood thinners to slow the clotting process. Proper treatment should allow you to lead a relatively normal and full life. However, some people with APS have severe damage caused by clots which occur prior to getting correct treatment. Some are affected by other diseases, particularly other autoimmune diseases and these things can make life difficult. In addition there are some ailments that seem to be associated with APS like migraine headaches. No one knows why. This disorder is not usually progressive when treated adequately with blood thinners and most people have no other clotting incidents. In some cases other symptoms like migraine headaches, brain fog, vision problems, etc., will clear up or improve within a few months after starting treatment. Thinning the blood reduces the risk of blood clots and in most cases is the only treatment needed. In some cases, aspirin may also be prescribed. Aspirin reduces the risk of blood clots by making the platelets less sticky. Be sure the aspirin is coated as even small doses over long periods can affect your stomach. ¨ Warfarin/Coumadin® The most common blood thinner prescribed is Warfarin (Coumadin). This is a very safe drug. It has been approved and used for almost 50 years. The proper dose of Coumadin can vary widely for different people. Your doctor will prescribe a daily dosage and after four or five days you will get a blood test (called Prothombin (Protime/PT) ) to show how fast your blood is clotting. The result of this test is a number called an "International Normalized Ratio" or INR. · An INR between 3 and 4 is considered ideal by Dr. Hughes and many other APS specialists. At that level, recurrence of blood clots is least likely. The INR value will tell your doctor how quickly your blood is clotting and the doctor may change your dosage to get to the required INR. It may take several weeks to get the INR at the level desired, and stable. It is important to eat, drink, and have normal physical activity as these can affect your INR. · Many things affect the INR value:\n* Vitamin K\nFound in many foods and\nsupplements but Green Leafy \nVegtables are a primary source.
  • Changes to medicines\nmany medications can affect the\nINR but antibiotics are a \ncommon factor.
  • Diet changes
When you fill your prescription, the Pharmacist will give you a pamphlet listing many things affecting your INR. The best policy is consistency in all things. Do not binge on any foods having medium or high values of Vitamin K. Be sure your doctor is aware of any changes in medication (even over the counter things such as herbal remedies), diet, or any other significant life changes. Be sure to talk with your doctor about any change in medicines, vitamins, herbs, food supplements, dieting or alternative medicine. Once your INR is stabilized, the doctor will lengthen the time between blood tests. It is best to take these periodic blood tests at the same time of day and the same day of the week and at the same location when it is possible. Periodic tests are needed to be sure your Warfarin requirements don’t change. This is necessary to protect you from blood clots or a hemorrhage. Even under the best of circumstances, INR results will sometimes vary and your medication will need to be adjusted to keep your blood at optimum levels. Heparin or Lovenox®. These are blood thinners administered by injection. The dosage is determined by body weight and blood tests are not normally required. Since the effects of Heparin only last 12 to 18 hours in the body , if dental surgery or an invasive medical operation is needed, the doctor may transfer you from Warfarin to one of these drugs temporarily. The drug can be stopped the night before the procedure and restarted soon after the procedure. You are only unprotected for a short period of time. Heparin is also used in pregnancy because of birth defects caused by Warfarin after 8 weeks of pregnancy. The injections are self administered in a similar way to that used by diabetics. In extreme cases, Vitamin K can be administered to reverse the affects of blood thinners

Problems for Women

Women may experience several problems:\n Pregnancy: APS causes several problems during pregnancy. Blood clots in the placenta can prevent the baby from getting sufficient blood supply from the mother. In a mild case this may cause a "small for dates/low birth weight" baby. In a more serious case preeclampsia may set in towards the end of pregnancy and a planned premature birth may be necessary. In the worse cases, miscarriage after miscarriage occurs, often late in pregnancy. ¨ During pregnancy it is important to be seen and monitored by a doctor knowledgeable about APS With the correct anticoagulation therapy using heparin and sometimes aspirin, healthy babies can be born to most women with APS. Warfarin (Coumadin®) cannot be used if you are still "trying" for a baby as it causes birth defects. It is important to see a knowledgeable doctor during pregnancy. Many women who had given up hope of carrying a baby to full term have successfully given birth following careful management of their APS. ¨ APS may also cause miscarriage, low birth weight, preeclampsia and other complications during pregnancy. If you are trying to get pregnant or are pregnant it is very important to let your doctor know immediately. Continued use of warfarin may cause birth defects. The doctor will change your medication to a different blood thinner that is safe. Using proper treatment, women with APS have about the same risks as other women during pregnancy. ¨ Interestingly many women who have problems with APS during pregnancy are completely fine when not pregnant. Others do go on to develop problems with clotting. Currently there is no way of telling which women will be unlucky, until a clot actually occurs. ¨ Birth Control Pills and Hormone Replacement Therapy. Birth Control Pills are not recommended if you have APS. Some women have suffered blood clots caused by "the pill" or HRT.\nAsk your doctor about the correct contraceptive for you.¨ Alternative contraception should be discussed with your doctor. ¨ In the case of HRT, some doctors believe that if the APS person is anticoagulated, then the risk of clots is very low and HRT treatment is okay for APS patients. Other doctors are in a "wait and see" mode because there just is not enough case history to be sure what is the proper course. ¨ Sensible natural precautions to prevent osteoporosis in later life such as daily walks and increased calcium in the diet are useful. Ask your doctor about the correct contraceptive for you and be sure to tell the doctor of any supplements you are considering using. ¨ Problems with Periods. Most women taking Warfarin experience problems with increased bleeding. If this is excessive it is not only inconvenient and uncomfortable, it can also lead to anemia. Tell your doctor about this problem. The doctor can recommend several things that may improve the condition and prevent anemia. One example is: for women who have already given birth and are not actively trying to increase their family, the Mirena® IUD has been successful in reducing period blood loss. As it only releases hormones to the uterus lining and is not absorbed into the blood stream, it is safe for APS women to use. \n

APS Risks

You will notice you bruise much more easily and even little cuts will bleed longer when you are taking Warfarin. This is because your blood clots more slowly when you are taking Warfarin. Serious injuries can be more dangerous when your blood is thin. Be much more careful during any activity which could result in injury. Contact sports are not a good idea. If a serious injury does occur go directly to the Emergency Room and be sure they know you are taking blood thinners and tell them what your INR was at the last test. You should have Medical Alert jewelry and wear it at all times. Your doctor or pharmacist can help you find a source. A bracelet is the most visible and easiest but there are also necklaces and other things available. Any indication of bleeding for no apparent reason should be reported to your doctor. This includes: · nose bleeds\n· bleeding more than normal when you brush your teeth \n· Dark or bloody stools\n· dark or bloody urine\n· excessive bleeding during menstrual periods\n· shortness of breath or difficulty breathing. Any of these may indicate your INR is too high and your blood is too thin.

Travel

Long trips, especially by air, have some clotting risk even for "normal" people. It is imperative for people with APS to get up and walk around to be sure the blood is flowing freely. Do this at least every couple of hours. On long auto trip stop at least every two hours and walk to be sure circulation is maintained. If you plan to be away during the time of a periodic blood test, arrange for the blood test before you start on the trip.

Medication

It is crucial to take your medicine every day. To help you remember, you should take the medicine at the same time each day. Get a pill box that holds at least one weeks supply of the pill(s). Or, another suggestion is to mark it on a calendar when you do take your medicine. It will help you to know if you have taken your pills correctly. If you miss a dose it is important NOT to take two doses in one day.

Medical Alert

In the event of a medical emergency it may be a matter of life or death for medical personnel to know you are taking Warfarin. Some type of Medical Alert jewelry is strongly recommended. Or at the least, carry a medical alert card in your wallet. If you work in an office, tell others what to do in case of an emergency to help you.

Information

Anyone testing positive for APS Antibodies should be aware of the symptoms caused by blood clots. If any of these symptoms occur, seek medical help immediately. Symptoms that could be caused by a blood clot include: ¨

Heart Attack

  • Chest discomfort or pain. Most heart attacks involve discomfort in the center of the chest that lasts more than a few minutes, or that goes away and comes back. It can feel like uncomfortable pressure, squeezing, fullness or pain. Generally becomes so bad that it may feel unbearable and relentless, but occasionally the pain can be milder.
  • Discomfort in other areas of the upper body. Symptoms can include pain or discomfort in one or both arms, the back, neck, jaw or stomach.\n \n* Shortness of breath. This feeling often comes along with chest discomfort. But it can occur before the chest discomfort.
  • Other signs may include breaking out in a cold sweat, nausea or light headedness.
¨

Stroke: (Blood Clot in the brain)

Strokes can be life threatening. Some stroke symptoms may last only minutes or a few hours and are called TIA’s. (Transient Ischaemic Attack or mini stroke.) Quick treatment (within three hours) is imperative. Medical treatments that reverse the stroke damage is available—but only if you seek immediate treatment. Stroke symptoms are:
  • Sudden numbness or weakness of the face, arm or leg, especially on one side of the body.
  • Sudden confusion, trouble speaking or understanding speech.
  • Sudden trouble seeing in one or both eyes.
  • Sudden trouble walking, dizziness, loss of balance or co-ordination.
  • Sudden, very severe headache with no known cause. Can also be very severe headache that lasts for days.
¨

Clots in other locations:

  • Muscle pain, numbness, or tingling, pale color, weakness, muscle spasm in a leg or arm. The arm or leg feels cold, hot or swollen to touch. May feel like a muscle strain.
  • Extreme pain without a cause, anywhere in the body.
  • Shortness of breath, or chest pain (under the breast bone or on one side of the chest) May radiate outward from the chest. (This could indicate a clot in the lungs or a heart attack.)
  • Sudden heavy cough especially if you cough up blood.
  • Rapid breathing.
Heart attacks, strokes and blood clots need immediate medical attention. Go immediately to Emergency Room. Caution: Do not drive or even try to walk to the ER alone. If you are alone, call for help as a clot may cause complete loss of function.

Other Occurrences

A number of things occur more often in APS afflicted people. It is not clear if these symptoms/complaints are caused by the disease itself, but many can be attributed to poor circulation of blood around the body. Some people may notice one or more of these symptoms years before APS is diagnosed. Often the symptoms will abate or even disappear once APS treatment is started. Some people diagnosed with APS have none of these afflictions.\n \nIf you have any of the following symptoms be sure to bring them to the attention of your doctor.
  • Chest pain very similar to that associated with a heart attack. But usually more of a dull ache in the chest, left arm or upper back. May be accompanied by shortness of breath, and a feeling of pressure. Similar to extreme indigestion. The pain subsides with rest in a few minutes to several hours. This may be Angina and should be reported to your doctor. Angina can be very uncomfortable but is not usually life threatening. The doctor can prescribe medication to reduce the severity of the symptoms.
  • Headaches, particularly migraine headaches.
  • Blurred and/or double vision, which may come and go, usually makes close work very difficult.
  • Visual disturbances. Occurring for short periods (up to an hour or more) and described as sparkles, a hole in the vision, or lines usually floating upwards. Sometimes followed by a headache.
  • Pins and needles, or numbness. Usually in an arm or leg and on one side of the body.
  • Dizziness or loss of balance.
  • Brain fog (memory problems or a very dense feeling).
  • Extreme fatigue.
  • Blotches, streaks or other discoloring on patches of skin.
  • Blue lines under the nails.
  • Sores that do not heal (Ulcers) usually on the legs or feet.
Bring these and any other unusual symptoms to the attention of your doctor. Note: in some cases you may want to start a medical diary to keep track of any events. List date, time, symptom, how long it lasted, severity, and anything that might have triggered it. Write down any questions you may have and take the diary with you to your appointments.

Coping with APS

If you are diagnosed with APS, treatment is lifelong. The risk of blood clots far outweighs the small risk presented by treatment. Some people have problems caused by clots occurring before the start of treatment, others have one or more of the symptoms listed in "Other Occurrences." It may be difficult for your family and friends to understand you have a life threatening illness or why you can’t do some of the things you did previously. Remember, your family and friends see you just as you have always looked and cannot know what is going on with your body. The comment, "you look so good" can hurt badly when you are really not feeling well. They cannot see an obvious symptom like a broken bone or fever. They have never had to face a long time, invisible illness. You may think they lack compassion. Tell your family and friends exactly what is happening to you. Use this brochure as a starting point and emphasize your fears and feelings. In some cases you may want a professional counselor to help you adjust with family and friends. Any person with a life threatening disease is at risk of being depressed. In some cases this progresses to clinical depression. It is very important to discuss your mental health with your doctor as well as your physical health. Your religious leader or doctor can help arrange a counseling session. In some areas there are support groups and there are several places on the Internet where you can communicate with others who have this disease. Some addresses are at the end of this brochure. You are the only one who knows exactly how you feel. Others with the same disease are very understanding and support groups of some kind can make your life much fuller. Your immediate family and children should be told about your disease, how it affects you, what it means to them as well as what you may have to expect of them in support. The good news is: many people with proper treatment live normal full lives. Others may find their lives changed forever due to APS, but a positive attitude will mean that life can still be worthwhile and fulfilling as the correct treatment prevents further problems.

Other sources for APS Information

¨ APLSUK is a forum on Yahoo for people with APS. When you sign up you can get messages sent once a day in a batch or as they are submitted by each member or you can choose to go to the site and read the messages and submit any comments you may have at the site. The Forum was established by Pads and Lynette to exchange ideas, treatments, help find good doctors, and exchange some humor too.\nThe APLSUK Forum has five moderators:\n* Lynette, Michelle and Kay are from England \n* Peter lives in Australia\n* Marv Lives in the US If you go to the Bookmarks section of the APLSUK Forum you will find links to a lot of APS information on the Internet. Please take time to look at the links. \nhttp://www.egroups.com/group/APLSUK ¨ At the APS site on Delphi.com, you read messages from others under headings interesting to you. You can start new strings of messages or add comments to the strings of messages that already exist. This site now has in excess of 20,000 messages. It was created and established by Mark Waxman, after being diagnosed with APS\nhttp://forums.delphiforums.com/apsantibody \n

Comments and Corrections

Send comments about this brochure to: gldpros@aol.com

Disclaimer

This brochure is for informational purposes only. It is not intended to provide medical advice nor take the place of a health care professional. This brochure was created for APS patients by APS patients. END Rev. 8 1/05 © 2003 Kay Thackray & Marvin Nelson\nKay has now had a book published about APS. It is called Sticky Blood Explained and is available from the Hughes Syndrome Foundation website \nwww.hughes-syndrome.org\n Author Pages & Notes \nMay 2002 Revisions 1-4 Editing, formatting and minor wording changes Revision 1-6 Extensive formatting and wording changes. Revision 1-7 Introduction change July 31, 2002 Revision 1-8 Removed several items that were out of date. Revision1-9 Added details about Kays book

"Too many pieces of music finish too long after the end." - Igor Stravinsky (1882-1971)