DEAR DR. GOTT: What can you tell me about antiphospholipid antibody syndrome? It has stirred my life up and caused pain no one can explain. I have had two pulmonary embolisms and deep blood clots down both legs clear to my toes. Since then, my chest hurts almost every day. If there’s no pain, pressure is present. The same with my head. I have had headaches and pressure when there isn’t pain. I also have trouble sleeping with ups and downs all night. I’m lucky to get a couple of hours sleep at a time. I’m wide awake at night but during the day I feel the worst and am tired. All I know is that no one seems to know much about this enemy of mine.
DEAR READER: Antiphospholipid syndrome (APS) is an unusual disorder in which the immune system incorrectly produces antibodies against certain normal proteins in the blood, causing blood clots to form within the arteries and veins. Blood clotting is a normal bodily process and prevents us from losing too much blood; however, with APS, too much blood clotting can block the flow of blood and cause clots to form in the legs, kidneys, lungs, and brain. There are two classifications of the disorder — primary and secondary. Without diagnosis of another autoimmune disorder, you are known to have primary antiphospholipid syndrome. With another autoimmune disorder, you are known to have the secondary form. The condition occurs most frequently in young and middle-aged women but men can also be affected.
You are experiencing common symptoms with blood clots and headaches. Other less common signs include a rash on the wrists and knees, episodes of bleeding, cardiovascular disease, migraine headaches, seizures, dementia when clots flow to the brain, problems with memory, depression, chorea (jerking movements of the body and limbs), and a sudden loss of hearing.
Causes for the disorder include the use of specific medications such as hydralazine for hypertension, quinidine for heart rhythm abnormalities and Dilantin taken for seizures. There is also an increased risk for those with history of a family member having the disorder, for people on amoxicillin and for those with specific infections to include hepatitis C, HIV, malaria and syphilis.
If left untreated, complications can lead to kidney failure, heart damage, pulmonary hypertension, pulmonary embolism, stroke, miscarriage, other problems connected with pregnancy, and.
Laboratory testing to document the disorder might include Anti-cardiolipin, Geta-2 glycoprotein 1 and a lupus anticoagulant. Confirmation can be made if the antibodies appear in the blood at least twice in tests conducted at least 12 weeks apart. Some individuals have APS antibodies but remain symptom free. The presence of APS antibodies does not verify an individual has the disorder. Rather, a person must have the antibodies as well as a history of medical problems related to the disorder.
While there is no cure once diagnosed, anticoagulant medication can control the disorder and prevent complications. Additionally, patients on this medication will likely be instructed to avoid injury such as with contact sports, accidental lacerations from such things as cutting vegetables, and working with scissors and other sharp instruments used for work or leisure activity. Use a soft toothbrush to prevent your gums from bleeding. Shave with an electric razor for the same reason.
Speak with your physician prior to beginning an anticoagulant regarding the use of any vitamins, cold relievers, ginko, green tea products, or alternative medications you may be on because of possible adverse reactions. The ingestion of alcohol and cranberry juice can have a bearing on the effects of an anticoagulant.
I’m not completely convinced your physician has good control over your disorder. I don’t know what section of the country you live in but I might recommend a second opinion from a local specialist familiar with APT or a trip to a facility such as the Mayo Clinic or another large teaching facility nearby where you can receive the proper medication and get a better handle on your life without going through the pain and agony you are presently suffering from.
Readers who would like related information can order my Health Report “Headaches” by sending a self-addressed, stamped number 10 envelope and a $2 US check or money order payable to Dr. Peter Gott, PO Box 433, Lakeville, CT 06039-0433. Be sure to mention the title when writing or print out an order form from my website’s direct link www.AskDrGottMD.com/order_form.pdf.
For still further information and the possibility of taking part in a clinical trial with other APS patients, I recommend you visit the two following informative websites: http://clinicalresearch.nih.gov and www.clinicaltrials.gov.
