Polycythemia vera symptom triggers: How to identify and avoid them

Symptoms can worsen due to environmental changes, like extreme weather or air pollution, dehydration, lack of sleep, and high emotional stress, saysMohamad Khasawneh, MD, a hematologist and medical oncologist at Loyola Medicine in Tinley Park, Illinois.

You cant completely eliminate your symptoms, but identifying habits and triggers that lead to a flare-up may help lessen them.

Common Triggers to Look Out For

Every persons experience with PV is unique, but many people react to a few key categories.

Environmental

• High Altitudes The air at higher altitudes is thinner, with less oxygen than at sea level.PV can lower the oxygen levels in your blood already, so living or traveling to high altitudes, such as the mountains, may make this worse.
• Extreme Temperatures PV causes your body to make too many red blood cells, which makes your blood thicker. That can lead to poor circulation, especially in your hands and feet, making them vulnerable to injuries from both heat and cold.
• Warm or Hot Water Exposing skin to warm or hot water can trigger intense itching, called aquagenic pruritus.Itching is a common symptom seen in about one third of the patients, saysJorge Cortes, MD, the deputy director of the University of Alabama in Birminghams ONeal Comprehensive Cancer Center and a spokesperson for the American Society of Hematology. A common trigger for this symptom is a hot shower. This can sometimes appear before the diagnosis of PV is made.

Dietary

• Alcohol Alcohol is a diuretic and can contribute to dehydration. This amplifies your risk of blood clots, which is already higher in PV because your blood is thicker.
• Caffeine The relationship between caffeine and PV is interesting. Research shows that regular consumption of caffeinated coffee is associated with a lower risk of developing PV.But if youve already been diagnosed with PV, then caffeine can act as a diuretic and increase the risk of dehydration. The U.S. Food and Drug Administration (FDA) has cited 400 milligrams (mg) a day as being a safe amount for most adults. That works out to about two to three 12-ounce cups of coffee.
• Red MeatGout is a painful condition that affects your joints and is also a possible complication of PV. Some patients may have gout attacks and certain foods may trigger such attacks, such as red meat, and alcohol, says Dr. Cortes. Sugary drinks and some types of seafood, including shellfish, anchovies, and mackerel, are also linked to gout flares.

Lifestyle

• Tobacco Use Smoking increases your overall risk for cardiovascular disease. It also causes blood vessels to become narrower, which makes it even more difficult for blood to flow, increasing the risk for blood clots.
• Inactivity Lack of physical activity can slow blood flow and increase the risk of clots. Fatigue, a common symptom of PV, may also worsen if you dont engage in any kind of exercise.
• Dehydration Being dehydrated can be dangerous for anyone but especially for someone with PV. With PV, blood flow is already slow, making you prone to clotting. Being dehydrated worsens that and increases your risk of developing a blood clot.
• Poor Treatment Adherence Management of PV is largely focused on reducing the number of red blood cells. If you dont follow your treatment plan, symptoms may flare up.Symptoms are mostly triggered by a high red cell count, particularly thrombosis, visual disturbances, burning pain of the hands or feet and others, or by the presence of an enlarged spleen that leads to abdominal fullness and discomfort, says Cortes.
• Other Health Conditions High blood pressure and high cholesterol are both risk factors for heart disease and can increase your chance of having a blood clot, heart attack, or stroke. Diabetes also raises your heart disease risk.

Track Your Triggers

Sometimes it may be obvious why youve had a flare-up while at other times it can be baffling. Logging your daily activities and symptoms can help you identify changes in your routine that may be triggers, and uncover a better treatment and prevention plan.

It is highly recommended to track your triggers, says Dr. Khasawneh. Keeping a simple daily food and symptom journal or using digital health tracking apps makes it easier to spot patterns.

Your healthcare team can help you find the tool that may be most useful.

The 3-Day Rule

Some symptom triggers dont cause an immediate reaction. It can take hours or even days for the symptom to occur. Thats why tracking is especially helpful. If you have a flare today, looking back at your log for the previous 24 to 72 hours can help you find the culprit.

Using a three-day rule can be an effective way to look back and trace delayed lifestyle or dietary triggers that might have caused a sudden symptom flare-up, Khasawneh says.

How to Avoid Your Triggers

Its not always possible to completely avoid triggers, but once youve identified them, you may be able to minimize their effect. While you cannot control everything, focusing on consistent sleep schedules, staying properly hydrated, and practicing routine stress management are highly effective ways to protect yourself, says Khasawneh.

If you have poor circulation and live in a climate with cold winters or hot summers, take measures to protect your hands and feet. Stay indoors if possible when temperatures are extreme, and make sure to wear warm gloves, socks, and shoes during the winter months.

Questions to Ask Your Doctor

The Takeaway