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Diseases > Polymyositis (PM) > What can I do about it?

What can I do about Myositis?

Being diagnosed with a chronic condition like myositis can be a little scary. The first thing is don’t panic. Take a deep breath. Although you might have been diagnosed with myositis, you are not alone. The most important thing is to treat it early. The longer you wait, the more your muscles can be damaged. Eventually, if myositis is not treated, the muscles can be destroyed. If you have myositis, it’s important to get treatment right away. There are effective treatments available that can help prevent your muscles from further damage.

If you have myositis or think you may have myositis, your family doctor should refer you to a rheumatologist without delay. A rheumatologist is a specialist doctor who is an expert in treating arthritis. You may also be referred to a neurologist who specializes in treating diseases that affect the muscles.

Here are some recommendations on what you should do if you have myositis:

  • Learn as much as you can about this disease. Education is very powerful and we’ve aimed to develop this RheumInfo website to be accessible and easy to understand for everyday people living with myositis and other forms of arthritis
  • Attend your family doctor, rheumatologist and/or neurologist appointments regularly
  • Get your blood tests done as suggested by your rheumatologist or neurologist
  • Learn about the medications used to treat myositis. The RheumInfo website has many interactive and valuable tools to help you understand these medications and their impact on your disease

Treatment of Myositis

There are effective treatments available for myositis. The right kind of treatment can help people with myositis return to their normal day-to-day lives. Treatment of myositis usually involves both medications as well as physical therapy.

If you have myositis, it’s important to treat it early and treat it aggressively. The longer you wait, the more damaged your muscles can become. There are effective treatments for myositis – so don’t wait around, get it treated!

Why is it important to treat myositis early?

Here’s an analogy. Imagine you are sitting in your living room enjoying a nice cup of coffee. You look over to the kitchen and see a fire burning on the stove. What do you think you’ll do? One option is to just sit there and wait until the fire gets worse and spreads to the walls or the ceiling. The second option is to grab the phone, dial the fire department, and grab the fire extinguisher.

You can think of myositis like a fire in your muscles. You want to get that fire put out as quickly as possible so it doesn’t damage your muscles. We also want to stop the fire before it spreads to other muscles. If left untreated, myositis can damage muscles and can eventually destroy them. No medicine can reverse the damage once it’s done.

Why is it important to treat myositis aggressively?

Using the same fire analogy, we’ve decided to call in the fire department. Now we need to make sure we have the right tools to put out the fire. We don’t want a bucket and water. We want a fire truck with a big hose. We might even want more than one fire truck. The faster we can get that fire out the better things will be in the long run.

When really important muscles like those that control breathing, the heart, or swallowing are affected, a person can die. That’s why we want to treat myositis early and aggressively, to stop the damage before it’s done.

Medications for myositis

Prednisone is the main medication used to treat myositis. It works by helping to control the immune system’s attack on the muscles. Your doctor may also recommend other medications called DMARDs in addition to prednisone.

For more information about specific medications used to treat myositis, refer to the “pictopamphlets” in the Medications section of this website.

Prednisone

Prednisone is a powerful medication that helps to control the immune system. Prednisone is usually started at high doses to quickly bring the disease under control. Once the disease is under control, the dose will usually be lowered (tapered).

DMARDs

The Disease Modifying Anti-Rheumatic Drugs (DMARDs) are medications that are used for other types of arthritis such as rheumatoid arthritis. DMARDs called methotrexate or azathioprine (Imuran) are often combined with prednisone to get the disease under control quickly. These drugs target the immune system. It can take a few months  before they noticeably control the inflammation of myositis.

Intravenous Immunoglobulin (IVIG)

A drug called intravenous immunoglobulin (IVIG) is sometimes used in people with severe myositis. This drug doesn’t work in everyone. But when it does work in a given person, it can work extremely well.

Exercises for Myositis

Physical therapy and exercise are an important part of your overall treatment plan. Medications can help reduce the immune system’s attack on the muscles. But to rebuild and to regain strength, flexibility and range of motion, physical therapy and exercise is very important. The right stretching and exercises can also reduce fatigue and the emotional distress of myositis. They should be done daily to derive the maximum benefit.

A trained arthritis physiotherapist can help design an exercise program to return your muscles to their former strength. The earlier you start an exercise program the better off you’ll be in the long run.

Natural or Home Remedies for myositis

There are no known natural remedies or complementary therapies that have been proven to help myositis in any significant way. Nevertheless, if you choose to use natural remedies or complementary therapies, you should check with your doctor or rheumatologist. Some medications may interact with these products.

Diet for Myositis

Questions about diet and rheumatic diseases are very common. We all want to know what we can do to help ourselves. Can we change our diet to help our myositis? Changing our diet gives us a sense of control over a disease which often seems to have a mind of its own.

Unfortunately, there is no diet that has been proven to significantly alter the course of myositis or other types of rheumatic diseases. Following the basics of healthy eating can help improve health and well-being in everyone, including those with myositis.

Taking prednisone for long periods of time can result in weight gain. Eating a healthy diet and getting regular exercise can help you achieve and maintain a healthy weight.

Alcohol and Myositis

Many of us like to share a glass of wine, a beer, or a spirit from time to time. Unfortunately, due to the nature of myositis, some people may turn to alcohol to help cope with the distress. Alcoholic beverages are not an effective treatment for myositis. They can also interact with some medications.

Smoking and Myositis

Cigarette smoking, whether you have myositis or not, has no positive effects on any aspect of your health. In rare cases, myositis can affect the muscles involved in breathing, making it harder to breathe. If you are a smoker with myositis, quitting could be one of the best things you can do to improve your overall health.

Concluding Thoughts

Myositis is a very serious condition. Left untreated it can cause serious problems. It is important to treat this disease early and aggressively.