My husband has polymyocitis, and has for over 3 yrs. Can anyone help with how I can cope better? It is hard.?

He had this for 10 weeks before finally being diagonsed. It is an immune disorder where your immune system thinks your muscles don't belong and attacks them. He is on IV-IG therapy, methotrexate shots, prednisone, and immuran. They can't seem to get him into "remission", and it is hard to watch him have a flare up, and dwindle down in front of my very eyes. He is still working through all of this too. I don't know how he does it. Does anyone know of this or how I can help he and I both to cope better? Sometimes he does better than I do. We have both gotten into a rut, where we don't want to go anywhere or do anything. I try to, but sometimes I would just rather be here with him. We both work, and sometimes that is all we do. I also attend things alone when I do go and then I feel guilty for having left him home. Any docs out there who know of different treatments? Thanks for listening and any suggestions you all may have.

How is polymyositis treated?

Initially, polymyositis is treated with high doses of corticosteroids. These are medications related to cortisone and can be given by mouth or intravenously. They are given because they can have a powerful effect to decrease the inflammation in the muscles. They usually are required for years and their continued use will be based on what the doctor finds related to symptoms, examination, and muscle enzyme blood test.

Corticosteroids have many predictable and unpredictable side effects. In high doses, they commonly cause an increase in appetite and weight, puffiness of the face, and easy bruising. They can also cause sweats, facial-hair growth, upset stomach, sensitive emotions, leg swelling, acne, cataracts, osteoporosis, high blood pressure, worsening of diabetes, and increased risk of infection. A rare complication of cortisone medications is severe bone damage (avascular necrosis) which can destroy large joints, such as the hips and shoulders. Further, abruptly stopping corticosteroids can cause flares of the disease and result in other side effects including nausea, vomiting, and decreased blood pressure.

Corticosteroids do not always adequately improve polymyositis. In these patients, immunosuppressive medications are considered. These medications can be effective by suppressing the immune response that attracts the white blood cells of inflammation to the muscles. Many types are now commonly used and others are still experimental. Methotrexate (Rheumatrex, Trexall) can be taken by mouth or by injection into the body. Azathioprine (Imuran) is an oral drug. Both can cause liver and bone-marrow side effects and require regular blood monitoring. Cyclophosphamide (Cytoxan), chlorambucil (Leukeran), and cyclosporine (Sandimmune) have been used for serious complications of severe disease, such as scarring of the lungs (pulmonary fibrosis). These also can have severe side effects which must be considered with each patient individually. Treatment with intravenous infusion of immunoglobulins (IVIG) has been shown to be effective in severe cases of polymyositis that are resistant to other treatments. Recent research reports indicate that intravenous rituximab (Rituxan) may be helpful in treating resistant disease.

Patients with calcium deposits (calcinosis) from dermatomyositis can sometimes benefit by taking diltiazem (Cardizem) to shrink the size of the calcium deposits. This effect, however, occurs slowly鈥攆requently over years, and is not always effective. The complication of calcium deposits in muscles and soft tissues occurs more frequently in children than adults.

Physical therapy is an important part of the treatment of polymyositis. When to begin and the continued degree of exercise and range of motion of extremities is customized for each patient.

Patients can ultimately do well, especially with early medical treatment of disease and disease flares.

The answer below is good. Socially ? I have a severe physical problem also. It's osteo-arthritis in the degenerative stages and, all they can do is treat the pain with drugs, the surgeons gave up. It's eating me faster then they can help.

My spouse has gone into a shock you could say, she just doesn't seem to understand unless I yell. I should understand her problems also but, it's hard. We've been married fifty one years.
We can't go anywhere without all my crap that I have to take including the control unit for my transplant, etc.

I feel for you and him. Hang in there.