Have you ever experienced a sharp pain that feels like it originates from the bone? Or perhaps the pain is more of a dull ache? In systemic mastocytosis (SM), mast cells can accumulate in the bone marrow, leading to bone damage and pain.
Easing bone pain from SM will look different in every patient — but there are ways to help this common symptom.
How does SM impact your bones?
In SM, a type of cell known as mast cells accumulate in various parts of your body. In many patients, they collect in the bone marrow. The buildup of mast cells in the bone marrow can cause bone pain. It can also lead to the loss of bone tissue and mass, a process known as osteoporosis and another cause of bone pain in SM.
Roughly 50% of people with SM have bone involvement. Osteoporosis is the most common way bones are impacted; one study found 42% of people with indolent SM have osteoporosis. Depending on the severity and extent of bone pain, patients may find it to be an occasional inconvenience — or a debilitating condition.
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How can bone pain be reduced?
Easing bone pain from SM will depend on many factors, such as your SM subtype and whether or not you have osteoporosis.
Avoiding triggers
One of the first steps in reducing bone pain is to avoid symptom triggers. Triggers differ between individuals, but often include stress, exercise and alcohol. In particular, you should avoid high-impact exercise if you have advanced osteoporosis or find it causes bone pain.
You may be tempted to take an over-the-counter pain medication to help ease bone pain. But many medications — especially nonsteroidal anti‐inflammatory drugs (NSAIDs), a common pain reliever — can trigger symptoms in people with SM. Check with your doctor before taking any medication.
SM therapies
Because SM affects the whole body, one of the most effective ways to treat bone pain in SM is to take medications that stabilize the condition generally. These therapies include mast cell stabilizers such as cromolyn sodium and KIT inhibitors like avapritinib and midostaurin. Interferon-alpha, which can directly address the abnormal accumulation and activation of mast cells in the bones, is an option for some with advanced SM.
Osteoporosis treatments
If you have been diagnosed with SM-related osteoporosis, bisphosphonates are likely to be useful. Bisphosphonates are typically prescribed for the management of age-related bone mass loss but can also be effective when bone mass is caused by SM. For patients who do not tolerate bisphosphonates, denosumab may be prescribed as a replacement.
Other treatments
In cases where bone pain flares up suddenly, a short course of corticosteroids may be helpful. However, long-term corticosteroid use can cause unwanted side effects, including osteoporosis.
Some patients with advanced SM may be eligible for stem cell transplantation, but this treatment comes with risks.
In summary, bone pain is a known complication of SM and can be dealt with via a mixture of lifestyle changes and targeted therapies. If bone pain is an issue for you, raise the subject the next time you see your doctor so that a suitable remedy can be found.
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