If you have a bleeding disorder, symptoms of sore joints may be par for the course. It’s when your joint pain goes beyond what’s typical that more specialized care may be needed, according to the American College of Rheumatology.
“When we see a patient who has joint problems that don’t improve with standard therapy, such as staying off of the joint or taking factor for a period of time, and there’s nothing radiologically different, that’s when we do routine bloodwork to look at rheumatologic conditions that could be going on,” says Chris Walsh, MD, a hematologist and associate professor of medicine at Mount Sinai Hospital in New York City.
Pain in many joints at the same time is also a sign of something out of the ordinary for people with bleeding disorders. “Multiple joints, simultaneously, makes us think that it could be autoimmune and not necessarily related to their bleeding disorder,” says Catherine Broome, MD, a hematologist and associate professor of medicine at Georgetown University’s Lombardi Comprehensive Cancer Center in Washington, DC.
Autoimmune conditions occur when the body’s immune system attacks otherwise healthy cells, often causing pain, swelling and discomfort. Sometimes these conditions present as rheumatic diseases that can affect the joints, muscles and bones. Common rheumatic conditions include:
- Rheumatoid arthritis, which attacks the lining of the joints throughout the body, primarily in the wrist and small joints of the hands.
- Scleroderma, which is characterized by overproduction of collagen, a connective tissue. It occurs in the skin and blood vessels, often causing pain and stiffness in fingers and joints.
- Gout, which is a buildup of uric acid in the joints. This condition is more common in men over 40 and those who have had an organ transplant. It usually affects the big toes, knees, wrists, fingers and elbows.
If you are experiencing any of these issues, talk to your hematologist about them. Then the two of you may decide that a rheumatologist needs to be added to your care team.
How to prepare
As with any specialist appointment, planning ahead can help you make the most of your time in the rheumatologist’s office.
Gather your personal information. Patients should bring the following to an appointment:
- Current lab and test results
- Recent platelet count
- List of affected joints
- Imaging records, such as X-rays, ultrasounds and MRIs
- Complete blood count
Jot down your symptoms on a timeline. Use a calendar to note when your pain started and how severe it was day by day. Observe whether there was a correlation with foods or activities that aggravated your pain.
Be your own advocate. When you consult a rheumatologist, it’s important to share your complete bleeding disorder medical history. “Patients should explain basically and honestly what their bleeding history is,” Walsh says. In addition, tell the rheumatologist what symptoms you have and why you were referred.
Know your boundaries
A rheumatologist will assess your symptoms. If it turns out that you need treatment, then it is important for your rheumatologist to work with your hematologist to determine an appropriate treatment plan, because many common rheumatologic treatments pose problems for patients with a bleeding disorder.
Treatment for rheumatic conditions must be tailored to patients with bleeding disorders. “It’s a team effort,” says Broome. “It requires a level of communication that may be a little different than for a patient who doesn’t have an underlying bleeding disorder.”