Can Factor V Leiden be cured?
Since Factor V Leiden is an inherited condition, there is no cure that can prevent the disorder or make it go away.
Can Factor V Leiden be treated?
Since there is not currently a way to fix the gene mutation, treatment is directed at dissolving and preventing the abnormal and dangerous blood clots.
The management of Factor V Leiden can be challenging. Over treating or under treating the blood clots or the risk for blood clots can lead to complications.
Over treatment can cause excess bleeding in the patient while under treatment can allow for the development of additional blood clots.
Ultimately, treatment varies depending on each patient’s individual medical history and current circumstances.
The goal is to lower the chance of having a dangerous blood clot while still letting the body make the normal blood clots that are needed.
The American Society of Hematology ( https://www.hematology.org/ ) periodically releases guidelines to the medical community for the management of venous thromboembolism. These guidelines outline the latest practices for the prevention and treatment of venous blood clots in patients experiencing various life situations and levels of risk.
People with Factor V Leiden who have a blood clot:
- People with Factor V Leiden thrombophilia who have had a deep venous thrombosis (DVT) or pulmonary embolism (PE) are usually treated with blood thinners called anticoagulants (meds such as heparin and warfarin).
- Anticoagulants are given for varying amounts of time depending on the person’s situation.
- It is not usually recommended that people with Factor V Leiden be treated lifelong with anticoagulants if they have had only one DVT or PE, unless they have additional blood clot risk factors.
People with Factor V Leiden who have never had a blood clot:
- People who have Factor V Leiden but have never had a blood clot are not routinely treated with an anticoagulant. Instead, they are counseled about reducing or eliminating other factors that add to their risk for clots.
- Some issues that should be discussed with your doctor include:
- Effective measures to eliminate or reduce other risk factors such as smoking, weight loss, and having a more active lifestyle.
- The possible need to wear compression stockings during long flights and road trips.
- Avoid dehydration.
- Avoidance of alcoholic beverages during long flights.
- Counseling prior to taking birth control pills with estrogen or before becoming pregnant.
- Surgery / illness – They may require temporary treatment with an anticoagulant during periods of particularly high risk, such as major surgery, a leg cast, or serious illness. Your doctor may also suggest leg wraps that inflate and deflate to keep blood moving in your legs, compression stockings, and going for walks after surgery.
Additional Risks for Women
- Certain birth control methods, pregnancy, childbirth, and hormone replacement therapy increase a woman’s chances of developing a blood clot. Factor V Leiden can further increase those risks.
- Women with Factor V Leiden thrombophilia most often have normal pregnancies.
- Treatment with an anticoagulant during pregnancy and/or following delivery is common depending on the woman’s personal and family health history, method of delivery, and other risk factors.
- It is extremely important that you inform your healthcare professional that you carry the Factor V Leiden mutation during these events.
What questions should I ask my doctor about Factor V Leiden?
- Given my medical and family history, does my Factor V Leiden need to be treated?
- Is my Factor V Leiden heterozygous or homozygous?
- Do I need to see a specialist?
- Do I need to take medication to prevent new or additional blood clots?
- If so, what side effects can I expect from the medication?
- Do I need to limit my activity or change my lifestyle in any way?
- If I have children, do they need to be tested?
- Does anyone else in my family need to be tested?
- What websites do you recommend?
What are the signs and symptoms of blood clots?
If you have Factor V Leiden, you need to be very aware of the symptoms of deep vein thrombosis (DVTs), pulmonary embolism (PEs), cerebral venous sinus thrombosis (CVSTs), and other types of blood clots so you can seek medical attention immediately.
Deep Vein Thrombosis (DVT)
If you have a deep vein thrombosis or DVT (leg or arm clot), you will notice pain or tenderness in your arm or leg – often described as a cramp or Charley horse -with one or more of the following:
- Swelling
- Red or purple skin color
- Warm to the touch
You need to seek IMMEDIATE medical attention if you have symptoms of a deep vein thrombosis.
Pulmonary Embolism (PE)
If a piece of a DVT breaks off and travels to the lung, it can cause a lung clot. We call this a pulmonary embolism or PE.
A pulmonary embolism can be a life threatening medical emergency.
If you have a Pulmonary Embolism or PE (lung clot), you may experience:
- Hard to breath or shortness of breath
- Chest pain – especially when trying to breathe
- Rapid or racing heart beat
- Fainting or passing out
- Coughing up blood
You need to seek IMMEDIATE medical attention if you have symptoms of a pulmonary embolism.
Cerebral Venous Sinus Thrombosis (CVST)
Some people with Factor V Leiden develop blood clots that manifest in the veins of the brain. Cerebral vein and cerebral venous sinus thromboses are blood clots that form in the veins that drain the blood from the brain called the sinuses and cerebral veins. They can lead to severe headaches, confusion, and stroke-like symptoms. They may lead to bleeding into the surrounding brain tissues. The clots can be triggered by infections of the ear, face, or neck, by medications containing estrogen, pregnancy, or dehydration. These triggers, especially if combined with Factor V Leiden, can cause a cerebral venous sinus thrombosis.
Symptoms from sinus and cerebral vein clots depend on the location and extent of the clot and vary from patient to patient.
If you have a Cerebral Venous Sinus Thrombosis or CVST, you may experience:
- Severe headache, often described as the worst headache that a patient has ever had. It can be a sudden onset, develop over a few hours, or develop over a few days.
- Nausea and vomiting
- Blurred vision
- Seizures
- Speech impairment
- Left or right body numbness
- Numbness or weakness of an arm, a leg, or both
- Confusion
- A decreased level of alertness
- Symptoms that greatly resemble what people think of as occurring in a stroke
A very extensive blood clot may lead to loss of consciousness and death.
You need to seek IMMEDIATE medical attention if you have symptoms of a cerebral venous sinus thrombosis.
What can I do to help prevent blood clots?
- Keep your weight in a healthy range.
- Eat healthy.
- Build physical activity and exercise into your daily life.
- Take care when traveling long distances by stopping every few hours and taking a short walk.
- Avoid estrogen-containing birth control.
- Drink plenty of fluids.
- Do not smoke.
