Pain can be difficult to manage because each person feels and responds to pain in his or her own way.1 For people with bleeding disorders, bleeding episodes in joints can be especially painful.2 There are a number of options available to manage pain, such as physical therapy and medication—be sure to discuss them with your healthcare provider (HCP).3,4
“No one knows your body like you do. Trust your intuition and be vocal about what you need. Be brave, be honest, and be strong. You are not alone.“ — Michelle, patient
Symptoms of a bleed can include joint pain, stiffness, and swelling.5 The most important thing to do when you have a bleed is to treat it as soon as possible.1 It's a good idea to keep a supply of treatment on hand, as well as phone numbers for Hemophilia Treatment Centers (HTCs) or bleeding disorder healthcare professionals.6
While the bleed is in progress, you should also follow R.I.C.E. to help with pain, reduce swelling, and prevent further damage. R.I.C.E. stands for Rest, Ice, Compression, and Elevation.1
Stop using the injured area as soon as possible. Depending on the seriousness of the injury, the injured area may require immobilization with splints, to keep the area at rest.1
Put ice on the injured area to reduce swelling and pain. You can use a bag of ice, a bag of frozen vegetables, or an ice pack product. Ice should be wrapped in a towel and not applied directly to the skin. The usual recommendation is to apply ice for 15 minutes and then leave ice off long enough for the skin to re-warm.1,7
Using an elastic bandage, apply pressure around the injured area.1
Hold the injured area above the level of the heart to help blood flow away from the area, reducing swelling.1,7
You may also consider using medication to reduce acute pain. However, because many pain medications can be harmful to people with bleeding disorders, you should be careful about which ones you use and talk to your HCP about what’s best for you.1
Nonsteroidal anti-inflammatory drugs (NSAIDs) (eg, aspirin, ibuprofen, naproxen) can interfere with clotting. Some people with a bleeding disorder can take ibuprofen or naproxen without increased bleeding, but this should be done under the supervision of their HCPs. Some people do take a type of prescription NSAID called a COX-2 inhibitor, which does not affect platelet function. However, there are other concerns with this type of treatment.1
Acetaminophen is an over-the-counter option for pain management that does not interfere with clotting. However, prolonged use of acetaminophen can harm the liver. Individuals infected with human immunodeficiency virus (HIV) or hepatitis C virus (HCV) should also exercise caution and talk to their HCP before using acetaminophen.1
Prescription pain medications can help with short-term and sometimes ongoing pain relief. These include oxycodone, morphine, methadone, and codeine. These drugs are effective for many people but can be addictive. They should be used as directed and under medical supervision.1
In addition to helping keep your joints and muscles strong and healthy, physical therapy and exercise can help decrease pain. Your physical therapist can design a program tailored to your specific needs.1
“It’s important to keep your joints healthy for the future. You don't want to have joint complications when advanced treatments roll around.“ — Amalia, Takeda community educator
Keep your mouth healthy so you can stay out of the dentist chair and free of mouth bleeds.
Acknowledging and addressing negative emotions is crucial to disease management.
Be prepared with questions so you can have better conversations with your healthcare provider.