Have You Recently Been Diagnosed With Antiphospholipid Syndrome?

Not sure where to start? The diagnosis itself can be a little bit overwhelming. We’ve compiled a list of tips for people who are newly diagnosed with APS from people who have APS.

Please note that these tips did NOT come from a Doctor or anyone in the medical profession.

Find a good Doctor who knows about APS or who is willing to learn about it. You may need to change doctors.
Learn as much as you can about APS. The more you know about YOUR illness, the better you’ll understand what signs to look for and what to tell doctors/nurses if ever needed. Try to find websites that site their information and are medically sound. Doctors are more willing to accept information that has its sources cited, even better if they are medical journals. There are also some well written books on APS on our Publications page.
Read our APS brochures on the Downloads page.
Be prepared for your doctor’s appointments. Write your questions down and get answers to all of those questions. Depending on how much your doctors know, you may need bring articles in to educate them on how to treat an APS patient. Be prepared when going to appointments.
You may need to be aggressive to get the treatment that is best for an APS patient. If you find yourself in the situation, doctors are more willing to accept information that has its sources cited, even better if they are medical journals.  Practice what you want to say ahead of time just like you would a speech. Remember, the doctors are working FOR YOU. If they are not willing to work with you, then fire them and find another doctor who will.

Journal your symptoms and INR readings along with warfarin doses.  Also take pictures of any rashes and discolorations that you may have. They may not be there when you see your doctor next.

If you are interested in an app to track your INR, the INR Diary is a good app.  INR Diary does not collect, use, save, or have access to any of your data on your smartphone.

Check out the Bearable app if you are more digitally inclined and want to take control of your symptoms, mood, anxiety, pain, headache, mental health, and meds—quick and easy symptom tracking for any chronic health issue or disorder. Discover what improves and worsens your symptoms so that you can find better ways to manage your health and well-being.

Your data is encrypted and thus cannot be read by anyone but yourself.   You are in complete control of your data and can export and delete everything from within the app anytime.

Use a log sheet if you are on Low Molecular Weight Heparin (LMWH) or Lovenox® (short or long term). We also have a LMWH brochure that’s available for download on our Downloads page. The brochure is about the proper way to administer the self-injections.

Find a good therapist. APS is a chronic, life-threatening illness and it always helps to have someone impartial to speak to.

Learn the symptoms of a clot, heart attack, TIA, stroke, and bleeding. Knowing these could save your life! Inform family and friends on the symptoms of the above and tell them what signs to look for. This could also one day save your life!

Wear a Medic Alert bracelet that states you have a hypercoaguable state and that you are on anticoagulants. (Paramedics and sometimes doctors don’t recognize what APS is. If you say you have a hypercoaguable state, they WILL recognize this. Think about the nature of an emergency you may have. In the event of a stroke or heart attack you may not be able to speak.) This WILL be important in case of an Emergency. Keep your information up to date on the Medic Alert website.

Do not smoke. Quit if you do smoke.
Do not take birth control pills. They will increase your risk for a blood clot.
Continue to drink plenty water, exercise and watch your weight.
Take your medication at the same time every day. Consistency is important later on if the memory issues and brain fog are part of your symptoms.

Check drug interactions. You can buy a Nurse’s Drug Book to help you learn about different interactions with your medications or use Drugs.com.  See our Publications page for examples.

Get your INR tested as directed. Go on the same day every week if possible. (You will not need your INR tested if you are on Lovenox shots or Direct Oral Anticoagulants)

If you are interested in an app to track your INR, the INR Diary is a good app.  INR Diary does not collect, use, save, or have access to any of your data on your smartphone.

Join a support group. There are people out there who are going through the same thing that you are. It will help to share experiences with people who understand. We have an online support group located at APS Friends and Family.

Be mindful when traveling. On long trips (flying or driving) get up and move around every couple of hours.

Watch your diet and Vitamin K intake—be consistent. This will help to keep your INR stable.

Strengthen your spiritual life; whatever that may mean to you.

Know that you are not alone. Your symptoms are real.

The tips above were provided by various members of the APS Friends & Support Forum.  None of these members are medical doctors; they are all APS patients.

Our Mission

Founded in 2005, the APS Foundation of America, Inc. is dedicated to fostering and facilitating joint efforts in the areas of education, public awareness, research, and patient services for Antiphospholipid Syndrome (APS) in an effective and ethical manner.

Information Sheets

APS
APS & Pregnancy
Anticoagulation
Catastrophic APS (CAPS)
Deep Vein Thrombosis (DVT)
GI Bleed
Heart Attack
Lupus

Migraines
Multiple Sclerosis (MS)
Pediatric APS
Pulmonary Embolism (PE)
Raynaud's Phenomenon
Stroke
Transient Ischemic Attack (TIA)
Vertigo

Contact

APS Foundation of America, Inc.
P. O. Box 801
LaCrosse, WI 54602-0801

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DISCLAIMER: The APS Foundation of America, Inc. website is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members is only an opinion. All information should be confirmed with your doctor. Always seek a trained physician's advice before seeking any new treatment regarding your medical diagnosis or condition. Any information received from the APS Foundation of America, Inc. website is not intended to diagnose, treat, or cure. This site is for informational purposes only. Please note that we will list all donors' or purchasers' names on the donor page of our foundation site. If you do not want your name listed, please get in touch with us to opt-out. If you think you may have a medical emergency, call your doctor or 911 immediately.