One of the scariest aspects of living with immune thrombocytopenia (ITP) is the possibility of uncontrolled bleeding. Because platelets (particles in your blood that are instrumental in blood clotting) can plummet to dangerous levels with ITP, it’s crucial to know your platelet count to keep yourself safe.
Your platelet count can be checked with blood work known as a complete blood count (CBC). If your platelet count is 10,000 or below, that’s when you need to be most careful, says James Martin, MD, a hematologist at Cleveland Clinic. “We need to keep you in a bit of a bubble at that stage,” he says. Even at 20,000, you’re still at high risk of bleeding and need to restrict activities.
With treatment, though, your platelet count should begin to rise to safer levels. As it reaches 30,000 and then goes to 50,000, you can start to loosen some restrictions. And once it hits 50,000, you can start to get back to your usual activity levels, says Dr. Martin. Why? This is considered a safe range that minimizes the risk of excessive or spontaneous bleeding from minor injuries.
At the end of the day, your safety is of the utmost importance when you have ITP. Here are some crucial ways to keep yourself safe and be prepared in case of uncontrolled bleeding.
- Get monitored with CBCs. “Testing frequency is very individualized, depending on bleeding risk, severity, and choice of therapy,” says Alexandra Wolanskyj-Spinner, MD, a hematologist at Mayo Clinic in Rochester, Minnesota. For example, a newly diagnosed 60-year-old person with platelets below 20,000 would be hospitalized and have their counts checked daily. Someone with established ITP who is on stable therapy may not need their platelet counts checked more than weekly or biweekly, she says. Follow your doctor’s recommendations on how often your platelet levels should be monitored.
- Know the signs. Besides platelet counts, there are other signs that you should see your doctor. Any changes in your health or evidence of bleeding, such as nose bleeds or blood in your urine or stools, could indicate that you need treatment, says Wolanskyj-Spinner. “Look for petechiae — dermis bleeding, often in the legs, that looks like tiny little dots or pin pricks. If you see them, you need a CBC right away.” Other signs of bleeding include purpura — bleeding under the skin that may look red, purple, or brown — and hematomas, which are partial blood clots under the skin.
- Avoid contact sports. Stay away from activities that have a high risk of injury, says Wolanskyj-Spinner. “Don’t bungee jump. Don’t play rugby,” she advises. You should also avoid any other sports or activities that can lead to injuries and cause bleeding, such as boxing, football, karate, skiing, or horseback riding. Talk to your doctor about activities that are safe for you.
- Be careful around sharp objects. Wear protective gloves when working with knives and other sharp tools. In the kitchen, prepare your meals with care, especially when using gadgets such as peelers and graters. Buying prepared ingredients or using a food processor instead can also help you avoid injury. For personal care, use an electric razor, and be careful with nail cutters.
- Be gentle with your gums. If you’re prone to bleeding gums, use a soft-bristled toothbrush, brush gently, and see your dentist regularly to keep your mouth healthy. Oral hygiene and plaque control are crucial to avoid gum bleeding and periodontal disease that could require surgery.
- Wear medical alert jewelry to notify paramedics and others of your condition. In case of a life-threatening bleeding emergency, it’s critical to initiate treatment as soon as possible. Request a hematologist as part of your care team if you end up in the emergency room.
- Carry antifibrinolytics, such as aminocaproic acid or tranexamic acid. These medications help stabilize clots and decrease bleeding. But they also carry the risk of forming unwanted blood clots. Talk to your doctor about whether or not they’re safe for you to keep on hand in case of an emergency.
- Take steps to reduce your risk of nosebleeds. Use a saline spray and turn on a humidifier at night to keep your nasal membranes moist. Avoid blowing your nose too forcefully. And sneeze with your mouth open.
- Avoid certain medications and supplements. For example, aspirin and ibuprofen — and any products that contain aspirin or ibuprofen — can increase the risk of bleeding by thinning the blood or preventing it from clotting. Tell your provider about any vitamins, herbs, or supplements you’re taking to make sure they aren’t risky for someone who has ITP.
- Enlist family members and friends to help. Living with ITP isn’t easy. “It can be overwhelming,” says Wolanskyj-Spinner. “Having support from close family and friends can be a big help.”
The Takeaway
- Monitoring your platelet count is an important way to manage your risk of uncontrolled bleeding if you have immune thrombocytopenia.
- Get in the habit of watching for signs of bleeding, such as petechiae, purpura, and unexpected nosebleeds. Call your doctor immediately if you have any of these.
- Practice safety precautions, such as avoiding contact sports and other high-risk physical activities, to minimize your chances of injury and bleeding. And carry antifibrinolytic medication if your doctor has prescribed it for emergencies.
