Medically reviewed by Christopher Lee, MD

• Exercise and dietary changes can help maximize your bone health in ISM. 
• Other lifestyle changes, like avoiding smoking and alcohol, are also important to maintaining bone health.
• Some people need medications to treat bone issues from ISM.

Some people with indolent systemic mastocytosis (ISM) lose bone tissue, developing osteoporosis or osteopenia. The bone fragility can make it easier to break bones. There are steps people with ISM can take to help maintain bone health.

1. Get Physically Active

Regular exercise is important for anyone at risk for osteoporosis or osteopenia, including people with ISM. In addition to its other benefits, exercise helps make your bones stronger. 

Part of your exercise routine should include weight-bearing exercises, which can help directly strengthen your bones. These can include:

• Walking
• Jogging
• Climbing stairs
• Playing tennis
• Doing tai chi
• Dancing

Muscle-strengthening exercises are also important. These could include using light-hand weights, using resistance bands, or doing pushups or squats. Some of these exercises can improve not only your muscle strength but also your balance, which may decrease your risk of broken bones. 

However, it’s important not to overdo it. If you haven’t been regularly exercising, it’s best to start slowly to prevent injury. To keep up with the routine, try to find something you enjoy doing regularly.

2. Follow a Well-Balanced Diet

Many people are aware of the importance of getting enough calcium to keep their bones strong. Eat foods high in calcium, such as dairy products, green leafy vegetables, or foods fortified with calcium. Some people also need calcium supplements to ensure they are getting enough of the nutrient.

Getting adequate vitamin D is also essential for healthy bones. You can increase your vitamin D intake by spending some time in the sun every day. Eating foods high in vitamin D, like certain fish, eggs, or vitamin D-fortified products, can also help. However, many people need to take a little extra vitamin D as a supplement.

Researchers now believe that many other nutrients help with bone health. For example, magnesium, vitamin C, vitamin K, and omega-3 fatty acids are also important for strengthening bones.

Overall, it’s helpful to do the following:

• Eat a wide variety of foods, including high-fiber foods like vegetables, fruits, beans, and nuts. 
• Eat plenty of protein.
• Minimize consumption of heavily processed foods.

3. Avoid Certain Habits

There are three common habits notably tied to worsened bone health. Try avoiding the following to maintain your bone health:

• Smoking: It not only increases rates of cancer, lung disease, and heart disease, but it also accelerates the development of osteoporosis.
• Excess alcohol: Experts have long known that excess alcohol use worsens osteoporosis. Don’t have more than two alcoholic drinks per day; even fewer may be ideal for bone health.
• Excess caffeine: This can impair your bone strength. Stick to four or fewer cups of coffee or other caffeinated beverages a day.

4. Get Regular Testing

When you are first diagnosed with ISM, you usually get a variety of blood tests to see if your bones have been affected. You also need some kind of imaging, like a dual-energy X-ray absorptiometry (DXA) scan.

Even if your bones aren’t affected at first, you’ll need to regularly repeat some of these tests. For example, you might need a new DXA every year. That way, your healthcare provider can monitor for new bone issues and get you treated quickly, if needed.

5. Take Medication

Even if you are taking steps to protect your bone health, some people with ISM may still need therapies to strengthen their fragile bones. 

Most commonly, this involves taking a type of medication called bisphosphonates. These include the weekly oral medications Fosamax (alendronate) and Actonel (risedronate). Other bisphosphonates, such as Aredia (pamidronate) and Reclast (zoledronate), are given through your veins. 

If bisphosphonates don’t work or you can’t take them, you may need another kind of therapy. For example, denosumab—sold under brand names like Prolia and Xgeva—is a therapy given via an injection that is often effective for osteoporosis from ISM.

Other sorts of treatments reduce the abnormal cells that cause ISM in the first place. Examples are Intron A (interferon alpha-2b) and Mavenclad (cladribine). Ayvakit (avapritinib) is a newer option.

Treatment choice will also vary based on the exact kind of bone condition you have from ISM.

Potential Bone Issues in ISM

When ISM affects bone health, it’s usually in the form of weakened bones. People with ISM usually develop osteoporosis or osteopenia, which is a milder weakening that happens before osteoporosis. However, some people may experience osteosclerosis, in which the bone is too hard and dense, but still brittle and prone to breaking.

Next Steps

If you are interested in taking a step toward better bone health, here are some good starting points:

• Keep a food diary. Use it to talk to your healthcare provider about whether you might need dietary changes, tests for vitamin levels, and/or supplements. 
• Work with a physical therapist or other provider to develop a personalized exercise plan that is safe and doable for you. 
• Talk to your provider about what monitoring you need for bone disease, like DXA, and put your testing dates on your calendar. 

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Kristina Dawson