PM most commonly occurs in the muscles of your shoulders, upper arms, hips, thighs, and neck. The muscles closest to your trunk will be affected the most. You might also experience pain, tenderness or swelling in these muscles. You will feel these symptoms, along with muscle weakness, equally on both sides of the body.
PM in your neck muscles can also make swallowing more difficult. Contact your doctor right away if you notice this symptom.
PM isn’t passed down genetically, but your genes may influence your likelihood of developing the condition. Certain viruses like HIV might also be triggers, but the truth is that PM usually occurs without explanation. For some reason, your immune system starts attacking healthy muscle tissue. While viruses like HIV can be connected to PM, it is more likely to develop in people with other autoimmune conditions, such as lupus or rheumatoid arthritis.
These symptoms can be caused by numerous conditions other than PM, but you should seek medical care right away no matter the cause.
You’ll also be asked questions about your medical history and family history—even though PM isn’t passed on genetically, it can be more common in some families.
The antibodies are evidence of your immune system attacking your muscles, and the enzyme is proof of their destruction of healthy tissue.
You may be wary of the needle, and the fact is that this procedure is a bit painful. The doctor can apply a topical anesthetic to your skin, but it will still hurt where the needle enters your muscle tissue. These spots may remain painful for a few days. However, electromyogram is an effective diagnostic tool for PM and is nearly always worth the discomfort.
MRIs are painless and a good choice for most people, but remaining still in the enclosed chamber can be a challenge for some. Learn about the procedure, ask questions, and don’t be afraid to voice your concerns. Ask how long the procedure will take, and let the doctor know if you’re worried about being in a small space for that long. You may be able to use soothing music or other calming techniques to make the process more manageable.
A needle biopsy. In this type of biopsy, your healthcare provider will insert a needle into your muscle tissue and remove a small amount of tissue through the needle. They may need to insert the needle more than once to get a large enough sample. An open biopsy, in which your healthcare provider will make a small cut into your skin and muscle and remove a small sample of muscle tissue. In either case, local anesthesia will be used, and you may experience some pain in the sample areas for a few days.
Prednisone, however, can cause numerous unpleasant side effects, including significant weight gain, bone weakness, and psychological distress. Therefore, it’s best to work with your doctor to use as little as is needed for as short a period of time as is needed.
They all usually have fewer side effects than prednisone, but you’ll still need to be monitored carefully and may need to change medications more than once. Some patients may be weaned off of medications and find that their symptoms don’t return. Others may need to be on medication indefinitely. PM is manageable, but not curable. You can find a chart listing common PM immunosuppressants at https://www. mda. org/disease/polymyositis/medical-management.
The antibodies will come from the plasma of blood donors. The infusion process usually takes 2-4 hours, and must be repeated every 3-4 weeks or so.
Because your muscles will be very weak, the program needs to start slow and develop gradually over time. Pool-based physical therapy is often very useful for PM, especially during the early stages of recovery. Expect to go to physical therapy multiple times per week, for at least several weeks and probably several months or more.
It’s okay to feel frustrated, scared, discouraged, or sad when dealing with a condition like polymyositis. Acknowledge your feelings, and let those close to you know when you are struggling or need someone to talk to. It’s also okay to say “no” to taking on tasks or obligations that you can’t handle, or ask for extra help. Remember that your doctor and the rest of your medical team are also part of your support system. Follow the treatment plan that you came up with together, and let them know if it’s not working for you or if new symptoms develop.
