Adapted from a presentation at the Myositis Support Group at Hospital for Special Surgery
Eating the right foods can offer individuals with myositis multiple benefits, including avoiding nutritional deficiencies, reducing the side effects of medicine, maintaining a healthy weight, and promoting an overall feeling of well-being. In a presentation to the myositis support group at HSS, Sotiria Everett, MS, RD, CDN, CSSD, Clinical Nutritionist discussed these topics as well as how to cope with swallowing issues and the use of nutritional supplements.
Ms. Everett also emphasized “the importance of first consulting your doctor regarding your nutritional needs and recommendations” before making any changes.
Considerations for a balanced diet
Including essential nutrients from each food group on a daily basis is an important key to a balanced diet. These include:
- Grains: a good low-fat source of fiber and energy. Whole grains, such as brown and wild rice, whole wheat bread, whole wheat pasta, rye, oats, quinoa, corn, and barley, are best, as they also provide a good supply of folate, Vitamin B6 and Vitamin B2, selenium, and zinc.
- Fruits and vegetables: contain antioxidants (a group of nutrients that fight free radicals, which can damage cells), and fiber. They are also excellent sources of Vitamin C and Vitamin A, and are naturally low in salt and fat. Fresh or frozen varieties (without sauces) are recommended. If canned fruits and vegetables are consumed, choose low-salt preparations. Intake of dried fruit and fruit juice should be limited, because of their high sugar content. Try to have one or more servings of fruit OR vegetable OR both per meal. A single serving is equal to ½ cup of cooked vegetables or fruit, or 1 cup of raw vegetables or fruit.
- Dairy products: the richest source of calcium - an essential mineral that builds bone and muscle; they are also excellent sources of zinc, B vitamins, Vitamin D, and selenium. Individuals who are lactose-intolerant (unable to digest lactose in dairy) may choose from lactose-free milk, soy milk, almond milk and other lactose-free products that provide calcium, such as calcium-fortified juices. The goal is to consume three servings of dairy products or dairy substitutes per day.
- Meat, fish, and poultry: excellent sources of protein. To meet the recommended guideline of one portion of lean protein at most meals, remove skin from poultry, trim away fat, and avoid frying; instead, broil, roast, poach, or grill these foods. In addition, practice portion control. A serving size should be 4 ounces (about the size of your palm.) Meat, fish, and poultry are also excellent sources of zinc, B vitamins, and iron.
- Beans, nuts, and seeds: provide vegetable protein and fiber. They are excellent sources of Vitamin E and selenium. Beans are also a healthy meat substitute. Choose unsalted nuts and low sodium beans including Brazil nuts, wheat germ, flaxseed, soybeans, kidney beans, and tofu; walnuts and lentils are also recommended for their high nutritional content.
- Healthier Fats: Foods that provide healthier fats, include monounsaturated oils, nuts, seeds and avocado. Olive oil is a monounsaturated fat rich in the antioxidant polyphenol. Try to limit solid fats, such as butter, stick margarine, shortening, and lard as they may contribute to heart disease.
- Omega-3s: are important in the diet, as they may reduce inflammation. Good sources include fatty fish (salmon, sardines, bluefish, mackerel, tuna, and halibut), ground flaxseed, walnuts, pecans, canola oil, walnut oil, and flaxseed oil. Include these fatty acids in your diet by adding chopped nuts or grilled salmon, tuna, or sardines to salads; sprinkle ground flaxseed on cereal or yogurt, and snack on unsalted nuts.
Addressing Swallowing Difficulties
Swallowing difficulties (dysphagia) occur in approximately one-third of people with myositis. Patients coping with these symptoms should consult their physician especially if:
- Swallowing is painful
- You feel that food is “stuck”
- You have heartburn
- You cough often when swallowing
- Have low grade fevers
- Find it difficult to finish meals
- Find that you lose interest in eating
Swallowing difficulties may be caused by dry mouth and/or muscle weakness and can lead to complications, such as aspiration pneumonia (food getting stuck in the lungs), weight loss, inadequate nutrition, and dehydration.
After consultation with your physician, you may be referred to a speech pathologist, who can provide certain tips personalized to your specific case.
You may also be advised to change your diet. Be sure to speak with your healthcare professional about what works best for you, as what works well for one person, may not work as well for others.
Your medical team may recommend:
- Soft foods that are easier to swallow
- Moist foods
- Drinking fluids can help in swallowing between bites
- Choosing soups and smoothies (a good way to get fruits and vegetables into your diet) that are pureed to an easy-to-eat or drink consistency
- Keeping a log to determine which foods work best.
In general, people with myositis and swallowing difficulties should avoid dry foods, such as crackers, dry cereal, and muffins.
Patients with swallowing difficulties may find that it can be a challenge to follow a balanced diet and get the proper nutrition. To address these needs, Ms. Everett recommended the following:
- Puree or finely chop well-cooked vegetables, which can then be added to soups.
- Add yogurt to creamed soups or smoothies.
- Add pureed cooked fruit or applesauce to yogurt or hot cereals.
- Season foods with spices that are rich in antioxidants, such as cinnamon, turmeric, and ginger.
To manage weight loss, your medical professionals may recommend:
- High calorie, high protein nutritional supplements, such as Boost® or Ensure®
- Adding high-calorie foods to meals, such as olive oil, cheese, pasta, and rice
- Using fortifiers like Carnation® Instant Breakfast in smoothies.
If severe weight loss is a concern, your doctor may recommend tube-feeding.
Medication and Side Effects
Many medicines that are taken for myositis, including corticosteroids, non-steroidal anti-inflammatory agents (NSAIDS), intravenous immunoglobulin (IVIG), and immunosuppressants (methotrexate, azathioprine, and cyclophosphamide), may have undesirable side effects.
In some cases, nutritional/dietary measures can help lessen these side effects.
Some nutrition suggestions for patients taking specific medications follow:
A Case in Point
Possible short-term and long-term side effects of corticosteroids, such as prednisone, hydrocortisone, methylpredisolone (Medrol), and Dexamethasone (Decadron, Hexadrol) include:
- increased weight gain,
- weakened bones (osteopenia, osteoporosis)
- high blood pressure
- high blood sugar
- possibly increased cholesterol levels- which may increase the risk of heart disease.
It is important, then, to be aware of nutritional intake. For example, it may be difficult to know if you have symptoms of osteoporosis, since this alone may not cause increased bone pain. Speak with your doctor about the need to have a regular bone mass density test performed.
For people taking steroids, blood glucose levels should be monitored by a physician, especially when high doses are given over a long period of time.
- Corticosteroids: take calcium and vitamin D; avoid salt, as it may cause you to retain fluid. Be aware of hidden sources of sodium (salt), such as canned soups and vegetables, luncheon meats, soy sauce, and marinades. Read food labels. Limit sugary food and drinks; choose whole grain carbohydrates; and practice portion control.
- Intravenous immunoglobulin (IVIG): may have side effects, the most common of which may include headaches, chills, dizziness, fever, nausea and vomiting, increased blood pressure and fatigue. In order to maintain proper nutrition during the course of treatment, prepare foods that you can tolerate in advance, or, if possible, consider getting help with food shopping and meal preparation.
- Immunosuppressants: because sun-sensitivity is associated with these drugs, it is important to have your doctor check your Vitamin D levels, regardless of sun exposure, as Vitamin D deficiency is very common. In addition, you may need folic acid supplementation, which can be found in fruits and vegetables. Because immunosuppressants may cause nausea, fatigue, fever, stomach pain, and associated decreased appetite, try to consume small meals that are easy to digest.
- Anti-inflammatories: stomach irritation (which can progress to bleeding ulcers) can occur when taking aspirin or NSAIDs (ibuprofen, naproxen, celecoxib). Ms. Everett recommends close monitoring of the use and side effects of these medicines. When taking NSAIDs, you may also need to avoid supplements that can act as blood thinners such as Vitamin E and fish oils.
Vitamins, Minerals, and Supplements
While vitamins, minerals and supplements may be helpful for some people with myositis, Ms. Everett emphasizes the importance of consulting a physician before taking any supplements, as they can interact with medications. It is also important to know that, unlike drugs, these products are not FDA-regulated. Also, there is lack of solid evidence/research to conclusively determine the effectiveness of many supplements.
In general, Ms. Everett recommended a combination of a balanced diet and supplements in order to get the greatest nutritional benefits. Among the supplements she reviewed were:
- Creatine: studied in muscle disease and thought to build muscle. This supplement is found naturally in meat and fish, though cooking slightly decreases the level. High doses has been found to harm the kidneys, however these findings involve the long-term use of creatine in athletes. Consultation is advised if considering creatine supplementation.
- Fish oil: may play a role in chronic heart and autoimmune disease by reducing inflammation. Fish oils contain large amounts of Omega-3s, EPA and DHA. Caution should be taken when using fish oils. Speak to your physician if you are taking fish oil and if surgery is planned or if taking blood thinners.
- Calcium and Vitamin D: have bone-building nutrients that may help to prevent or slow down the progress of osteoporosis. As there has been an increased awareness of the damaging effects of overexposure to the sun, especially in people with autoimmune diseases, Vitamin D deficiency is common, and many doctors include Vitamin D testing in their regular checkups. Since corticosteroids play a role in increasing osteoporosis risk, it is important to speak with your doctor about the calcium and Vitamin D dosage that is right for you. In addition to dairy products, calcium can be found in wild salmon and sardines (with bones), enriched/fortified soy milk, shitake mushrooms, broccoli, kale, and fortified breakfast cereals.
The recommended single dose of calcium is 500-600mg. The amount of calcium an individual needs per day varies from person to person and should be discussed with the individual’s physician. Calcium is best absorbed when taken with food, or morning and evening, depending on how much is recommended by the physician.
- Coenzyme Q10(CoQ10): lower levels have been found in people with muscle diseases, but lack of research makes it difficult to know what the benefits of supplements are for people with myositis.
- Glucosamine: though thought to play a role in cartilage, ligament, tendon, and muscle repair and used in combination with chondroitin to reduce joint pain in arthritis, there is a lack of research and evidence that this can help people with myositis.
A balanced diet may help prevent nutritional deficiencies, reduce some of the effects of myositis, reduce side effects of medicines and treatments, maintain a healthy weight, and contribute to feeling better. To derive these benefits, include a variety of nutrients in your diet: nuts, fish, dairy, olive oil, fruits, vegetables, whole grain and spices.
Choose foods and spices that are high in antioxidants such as fatty fish, ground flaxseed, walnuts and pecans, canola oil, walnut oil, flaxseed oil, certain fruits and vegetables as well as ginger and turmeric.
People with myositis should be aware of the signs of swallowing difficulties and report these symptoms to a physician promptly. He or she may recommend a modified diet and/or refer you to a nutritionist or speech pathologist, for additional assistance in managing this issue. Because each patient responds differently—that is, what works for one person, may not work for another—be sure to speak with a physician before making any changes to your diet.
Summary by Suzan Fischbein, LMSW, Myositis Support Group Coordinator
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