Bleeds into joints are major pain triggers for people with bleeding disorders. Yet when researchers surveyed 764 adults with hemophilia A and B for the landmark 2012 National Pain Study, 39% reported that their pain was not well-treated.
Now, new research is turning up practical clues for finding relief. That’s especially good news for older adults, says Michelle Witkop, FNP-BC, head of research for the National Hemophilia Foundation and lead researcher on the National Pain Study.
“Prophylaxis—preventive treatment with clotting factor to reduce bleeding risk—only became available in the mid-1990s,” Witkop says. “Children with bleeding disorders are at lower risk for the microbleeds into joints that cause joint damage in the first place thanks to prophy. But it wasn’t available early in life for older adults. This group is living with more joint issues and more pain.”
As more research focuses on pain in the bleeding disorders community, it’s clear that new treatment strategies and better access to relief are high priorities. At the same time, some available strategies aren’t used often enough, studies and experts note.
Keeping pain in check
The following strategies can help prevent and ease pain from joint bleeds and other causes of pain experienced by people with bleeding disorders:
1. Keep up with prophylaxis. It’s not just for kids. If your healthcare provider has recommended regular infusions to prevent bleeds and joint damage, it’s important that you stick to the prescribed schedule and dose. “Keeping up with prophy can prevent microbleeds into joints,” Witkop says. “That way you don’t have to use it when you have pain and bleeding. You can stay ahead of it.”
2. Seek out physical therapy options. “If you have chronic pain, it’s worth talking with your provider about a referral,” says hematologist Tyler Buckner, MD, assistant professor of medicine at the University of Colorado School of Medicine in Aurora. A physical therapist can help you care for a painful joint. He or she can also help you strengthen muscles around an affected joint and maintain flexibility and range of motion.
3. Don’t go it alone, and avoid risks. Talk with your doctor about the best pain-relief strategy for you. “Don’t use NSAIDs (nonsteroidal anti-inflammatory drugs such as ibuprofen and naproxen) on your own,” Witkop says. “Over-the-counter types can increase bleeding risk for many people.” Weighing the pros and cons of opioids can be confusing for people with bleeding disorders, and for their physicians, notes Buckner. “Prescription opioids are effective for treating acute pain,” he says. “They have limited effectiveness for long-term pain relief.”
4. Ask about nondrug options. Acupuncture, mindfulness, music therapy and other alternative and complementary therapies are emerging as add-on treatments for pain relief. Not all health insurance covers these strategies. If you pursue these, work with practitioners recommended by your doctor to be sure a treatment is safe for you.