I have dermatomyositis remission means what? I am still extremely tired,feel like throwing up all the time and gained 50 pounds from the steriods, taking a shower can be a all day event, I miss who I was! I ran my own business for 10 years now, I can barely be a wife. Does the pain ever go away? My muscles are so tired.
Dermatomyositis is an uncommon inflammatory disease marked by muscle weakness and a distinctive skin rash. Medically, polymyositis is classified as a chronic inflammatory myopathy — one of only three such diseases.
Dermatomyositis affects adults and children alike. In adults, dermatomyositis usually occurs from the late 40s to early 60s; in children, the disease most often appears between 5 and 15 years of age. Dermatomyositis affects more females than males.
Periods of remission, when symptoms of dermatomyositis improve spontaneously, may occur. Treatment can clear the skin rash and help you regain muscle strength and function.
The most common signs and symptoms of dermatomyositis include:
Skin changes. A violet-colored or dusky red rash develops, most commonly on your face and eyelids and on areas around your nails, knuckles, elbows, knees, chest and back. The rash, which can be patchy with bluish-purple discolorations, is often the first sign of dermatomyositis.
Muscle weakness. Progressive muscle weakness involves the muscles closest to the trunk, such as those in your hips, thighs, shoulders, upper arms and neck. The weakness is symmetrical, affecting both the left and right sides of your body, and tends to gradually worsen.
Other dermatomyositis signs and symptoms that may occur include:
Difficulty swallowing (dysphagia)
Muscle pain or tenderness
Fatigue, fever and weight loss
Hardened deposits of calcium under the skin (calcinosis), especially in children
Gastrointestinal ulcers and intestinal perforations, also more common in children
The exact cause of dermatomyositis is unknown, but the disease shares many characteristics with autoimmune disorders, in which your immune system attacks normal body components.
Normally, your immune system works to protect your healthy cells from attacks by foreign substances, such as bacteria and viruses. If you have polymyositis, an unknown cause may act as a trigger for your immune system to begin producing autoimmune antibodies (autoantibodies) that attack your body's own tissues. Many people with polymyositis show a detectable level of autoantibodies in their blood.
Small blood vessels in muscular tissue are particularly affected in dermatomyositis. Inflammatory cells surround the blood vessels and eventually lead to degeneration of muscle fibers.
There's no cure for dermatomyositis, but treatment can improve your skin and your muscle strength and function. The earlier treatment is started in the course of dermatomyositis, the more effective it is, leading to fewer complications.
For most people, the first step in treatment for dermatomyositis is to take a corticosteroid medication. Usually for dermatomyositis, the chosen medication is prednisone.
Corticosteroids are medications that suppress your immune system, limiting the production of antibodies and reducing muscle inflammation, as well as improving muscle strength and function. Your doctor may also prescribe topical corticosteroids for your skin.
Your doctor may prescribe a high dose to begin with, and then decrease it as your signs and symptoms improve. Improvement generally takes about two to four weeks, but you may take the medication for several months. Prolonged use of corticosteroids can have serious and wide-ranging side effects, which is why your doctor may gradually taper the dose of medication down to low levels.
Because of the potential for serious side effects, your doctor may recommend supplements to combat them, such as calcium and vitamin D.
Additional immunosuppressive therapies
If a corticosteroid medication doesn't seem to be working effectively in your case, as a secondary approach your doctor may recommend that you add or switch to another medication:
Corticosteroid-sparing agents. When used in combination with a corticosteroid, a corticosteroid-sparing medication can decrease the dose and potential side effects of the corticosteroid. These medications include azathioprine (Azasan, Imuran) or methotrexate (Trexall, Methotrexate, Rheumatrex). Your doctor may prescribe azathioprine or methotrexate initially along with prednisone if your disease is very progressive or if you have complicating factors. Some doctors prescribe these medications as a first line treatment for people in whom corticosteroids aren't recommended.
Intravenous immunoglobulin (IVIG). IVIG is a purified blood product that contains healthy antibodies from thousands of blood donors. The healthy antibodies in IVIG can block the damaging antibodies that attack muscle and skin in dermatomyositis. This treatment is given as an infusion through a vein. The effects of IVIG are beneficial but don't last very long. Repeat infusions every six to eight weeks are often necessary.
Other immunosuppressive medicine. Tacrolimus (Prograf) is a transplant-rejection drug that may work to inhibit the immune system. Tacrolimus is often used topically to treat dermatomyositis and other skin problems. When taken orally, it may be helpful in treating people who have dermatomyositis complicated by interstitial lung disease.
Immunosuppressants, such as cyclophosphamide (Cytoxan) and cyclosporine (Gengraf, Neoral, Sandimmune), may improve signs and symptoms of dermatomyositis and interstitial lung disease.
If your case is severe and other treatment options have failed, your doctor may recommend one of these investigational medications as a third line approach to treating dermatomyositis:
Rituximab (Rituxan) has been studied in small numbers of people with polymyositis and dermatomyositis and shown to improve muscle strength, lung involvement and skin rash.
Tumor necrosis factor (TNF) inhibitors, such as etanercept (Enbrel) and infliximab (Remicade), are medicines that target key proteins associated with inflammation.
However, there aren't many scientific studies to date about the effectiveness of these agents on dermatomyositis. If your doctor prescribes one of these medications, he or she will closely monitor you to make sure the medication is working and to check for side effects. These medications can be expensive and, because they're experimental for treating dermatomyositis, may not be covered by insurance.
Other treatment approaches
Other treatment options your doctor might recommend include:
Antimalarial medications. For a persistent rash, your doctor may prescribe an antimalarial medication, such as hydroxychloroquine (Plaquenil) or chloroquine (Aralen).
Pain relievers. Over-the-counter drugs such as aspirin, ibuprofen (Advil, Motrin, others) and acetaminophen (Tylenol, others) can be used to treat pain. If these aren't sufficient, your doctor may prescribe a stronger pain reliever, such as codeine.
Physical therapy. A physical therapist can show you exercises to maintain and improve your strength and flexibility and advise an appropriate level of activity.
Speech therapy. If your swallowing muscles are weakened by dermatomyositis, speech therapy can help you learn how to compensate for those changes.
Dietetic assessment. Later in the course of dermatomyositis, chewing and swallowing can become more difficult. A registered dietitian can teach you how to prepare easy-to-eat foods.
Surgery. Surgery may be an option to remove painful calcium deposits and prevent recurrent skin infections.
Hope the info is useful? Take care, best wishes!
So sorry to hear you're still not feeling good even though you reached "medicated remission". When were you first diagnosed?
My husband was just diagnosed a few weeks ago. He starts physical therapy this week and hopefully that will help, along with the medications, and I've heard that yoga and meditation are helpful too. Also I've read that aquatic therapy and/or exersice is good
From what I've read about this illness, depression can be a real problem, especially since this is a chronic disease. I can only urge you to hang in there. You're not alone.
Karen all this is quite frustrating and hard to understand. I have a couple of questions for you. Is your dr a rheumatologist that specializes in DM? Are you a member of the The Myositis Association? If not, then google it and join (it is free), there is a community forum that is wonderful. Is your DM in your muscles and your skin? Mine is skin only and when I have flare ups it knocks me out!! I am so incredibly tired for a couple of weeks I don't care if I move an inch, eat, drink, shower or anything. I also miss who I was, although not sure I would remember that person anymore. I do remember what I used to accomplish!!
Good luck and don't give up. One thing I still have is my sense of humor which I am thankful for.
Karen, I'm sorry about how you are feeling. I am also in remission however I really do feel wonderful. Not sure how you can be in remission and still feel horrible. I had (have) the rash/muscles weakness and was treated with high doses of Prednisone, then slowly tapering off. I still take Methotrexate once a week but I am so much better.
Like the other responder suggested, make sure your doc has experience in Dermatomyositis.
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