Systemic mastocytosis and bone health: Your ultimate guide

Mature adult woman suffering from acute back pain while standing in her modern kitchen, touching her aching lower back
(Courtesy of Getty Images/Mariyariya)
Patients with SM are at high risk of bone disease. Explore what you should know about the topic.

In systemic mastocytosis (SM), 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 condition known as osteoporosis — and another cause of bone pain in SM.

Bone disease is common in SM; while estimates vary, it affects about one in five patients, with some estimates placing the number at one in three. Yet many patients — and sometimes their doctors — don’t know about the risk.

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MastocytosisMastocytosis Rare disease caused by the buildup of mast cells. Cutaneous mastocytosis primarily affects the skin and is more common in children, while systemic mastocytosis affects internal organs and is more common in adults. and bone disease: Learn the basics

Most patients with SM will be familiar with mast cell mediators as the main driver behind symptom flares. But these mediators cause long-term harm, too. Over time, mediators in your bone marrow can disrupt the normal cycle of bone tissue renewal that helps keep your bones strong.

Man sitting on couch clutching lower back in pain

Systemic mastocytosis and bone health

Osteoporosis can leave bones more fragile and at risk of fracture. Explore why, and the treatment options that can help.

Sad woman sitting on floor in front of couch

What it’s like to live with ISM and osteoporosis

Severe osteoporosis has ravaged my bones and teeth, writes SM Ambassador Tara Keith. Learn what she wishes she’d known earlier about SM and bone disease.


Monitoring bone health: What to know about DEXA scans

A dual-energy X-ray absorptiometry scan, more commonly known as a DEXA scan, is a key tool doctors use to monitor bone density.

DEXA scan machine

What to expect during a DEXA scan

A DEXA scan will likely be one of the easiest tests you have as part of your SM journey. Learn what to expect before, during and after the test.

Photo shows Doctor explain bone mass density

Why you should get a bone density scan if you have SM

SM Ambassador Tara Keith was only 51 when she learned she had severe osteoporosis caused by indolent SMIndolent SM A subtype of nonadvanced SM caused by the abnormal accumulation of mast cells in the bone marrow and other organs. Indolent SM accounts for around 90% of SM cases.. Read her advice for talking with your doctor about early scanning.


Lifestyle tips for better bone health

There is no cure for osteoporosis, but there’s many proactive steps patients with SM can take to help reduce symptoms and protect their bone health.

Older woman rubbing painful hand

How to ease bone pain from SM

For some patients, bone pain is a minor annoyance; for others, it’s a debilitating symptom. A mixture of lifestyle changes and targeted therapies can help ease the discomfort.

Photo shows Vitamin D supplements poured into a hand/Getty Images

Understanding the importance of vitamin D

In SM, digestive issues may mean you are not absorbing nutrients correctly, leading to low levels of vitamin D — a vitamin crucial for bone health.

Woman walking on treadmill at the gym

What to know before hitting the gym with SM

Weight-bearing and resistance exercises can help build bone density, but patients with SM should take certain precautions before visiting the gym. Learn what to know.


The latest research

From a new focus on tailored care to machine learning tools that predict risk, medicine is moving toward a better understanding of how to prevent and treat bone disease in SM. Explore some of the latest stories.

Close up Bone Densitometry Result on the table

DEXA bone scans may miss fracture risk in SM

While DEXA scans remain an important part of monitoring bone health, research suggests it should be accompanied by other testing.

Photo shows a medical professional looking at x-ray image of a patient/Getty Images

New treatment approach for osteoporosis in SM shows promise

The immunotherapy peg-interferon-alfa2a (peg-IFN-α) offers a promising approach for treating bone disease in nonadvanced systemic mastocytosis.