Does anyone know anything about "Dermatomyositis"

Hi this is Jay4,Does anyone anything about "Dermatomyositis" any info would be helpful.thanks

Hi Jay,
I'm looking through some of my medical texts...when I gather up a good chunk of info, outcomes, and manifestations I will post them for you.
Do you suffer from this currently?
Take care Jay & speak to you soon
Erin

Hey Jay4-

This is what I've found so far:

Dermatomyositis is one of a group of acquired muscle diseases called inflammatory myopathies. The disease, which has a somewhat severe onset, affects both children and adults. Females are more often affected than males. Dermatomyositis is characterized by a rash accompanying, or more often, preceding muscle weakness. The rash looks like patchy, bluish-purple discolorations on the face, neck, shoulders, upper chest, elbows, knees, knuckles, and back. Some people may also develop calcium deposits, which appear as hard bumps under the skin. The most common symptom is muscle weakness, usually affecting the muscles that are closest to the trunk of the body. Eventually, people have difficulty rising from a sitting position, climbing stairs, lifting objects, or reaching overhead. In some cases, muscles further away from the trunk of the body may be affected later in the course of the disease. Problems with swallowing (dysphagia) may occur. Occasionally, the muscles ache and are tender to the touch. Affected individuals may also feel fatigue and discomfort and experience weight loss or a low-grade fever.

Treatments:

Prescribing a steroid drug, such as prednisone, is usually the first line of treatment. Immunosuppressants, such as azathioprine and methotrexate, may help those for whom prednisone is ineffective. Further treatment with intravenous immunoglobulin was shown to be effective and safe. Physical therapy is usually recommended to preserve muscle function and prevent muscle wasting.

Most cases of dermatomyositis respond to therapy. The disease is usually more severe and resistant to therapy in individuals with cardiac or pulmonary problems.

What is her doctor doing for her?  Is she on any meds?  Good luck to you and please keep up posted... - Duck

Hey Jay4 - I found more info... hope this helps... Chronic abdominal pain is a common nonspecific finding which may also necessitate a higher corticosteroid dosage. In most situations the corticosteroid dosage can be monitored by following serial CPK or aldolase levels. The treating physician must be aware that prednisone themselves may cause muscle weakness (steroid myopathy ). If the patient is becoming weaker without a corresponding increase in the muscle enzyme levels, it may be necessary to rapidly taper the corticosteroid dosage. However, this may be associated with a disease flare. 'IV bolus' prednisone are useful if a rapid response is need for critically ill children with dermatomyositis, but are associated with potentially severe side effects. Most children will recover completely with prednisone alone. However, some will have persistent, active disease or develop unacceptable corticosteroid side effects. Methotrexate is often beneficial for these children. Low dose oral methotrexate at 10 mg/M2, has been relatively ineffective for childhood dermatomyositis. Larger doses of methotrexate (0.1 mg/kg gradually increased to 1 mg/kg) administered weekly, intramuscularly or intravenously, have been associated with a dramatic improvement. Hepatic toxicity and white blood cell levels must be monitored carefully. Intravenous methotrexate therapy in this dose range may also be associated with significant nausea, which may be reduced by premedication . For most children the maximum necessary dosage of methotrexate is 1 mg/kg (with a maximum of 50 mg). However, higher doses have been used successfully in selected cases. New studies suggest the etanercept (Enbrel) or other agents which block tumor necrosis factor ( TNFa ) may be less toxic and more effective in treating children with dermatomyositis.   In addition to medical management, patients with dermatomyositis or polymyositis require an ongoing program of physical and occupational therapy to prevent continuing weakness and the development of contractures. Passive range of motion and icing are of benefit even during periods of active muscle inflammation, but active range-of-motion and isometrics should be withheld until the muscle enzyme levels are declining. What is the long term outlook? The long term outlook for children with dermatomyositis is good. Although some children do have very severe disease most will eventually recover nearly full function.  Ok, we may have to have Erin interpret that for us... but the outlook seems great... just sounds like it's at it's worst in the beginning... Let us know how she is doing, my heart goes out to her... - Duck

Erin and Ducky,Thank you for all the info,It means a lot to me and to her family.My hubby and I watched grace and her little sis last night just to get her mom some free time while daddy  was a work,Grace seems to be talking through her nose,it is hard to understand her sometimes.She really seems to be hurting,she is givin motrin for the pain.she seems very restless.thanks again for all the info.Please keep us in your prayers.wishing you a very happy holiday.thanks Jay4

Dear Jay4,

Glad you got time to spend with her!  My grandmother is my hero!  She kicked end stage colon cancer's BUTT!!!!  complete remission.  Here's to grandmothers!

When you say restless, is she just having like "cabin fever"? and frustrated with everything, or is she physically restless?  like tossing and turning, restless legs, uncomfortable, dizzy, headache?  Clinical restlessness can be brought about by edema/swelling. Take notice if her hands and arms and feet twist inward whe lying down and turn stiff.  Just for caution.  Unlikely, but swelling near the brainstem can cause increases pressure around the brain causing restlessness. Let me know.  This I have never heard of with what she has, but with kids NEVER LEAVE A STONE UNTURNED I'm sure you feel the same way.

Is she sounding nasal?  The "talking through her nose" can be from irritation to the sinuses from the reflux caused by the dyshagia.

I meant to ask, some kids get mouth ulcers with this making it MORE painful to eat.  Salt water swishes help with that.

What are her days like now???  Is she able to get about a little???

    Tell Grace we at HW say "Goodmorning! and We're thinkin' of ya!  Hang in there sweetheart!"

Take care Jay4

Jay4, my heart goes out to you and your family. What an awful crisis to go through. I will keep all of you in my prayers. I can't offer any other suggestions that haven't already been made. Just know that you are not alone in this. We will all support you here. Emotionally we are with you.

May God grant you the courage to face this head on and get through it. Lean on your hubby and God through this. God will get you through it.

Oreo

I can't thank you all enough for all your support,It means so very much to my family and me.I'm going to help my kids and granddaughter anyway I can,and I talked to gracies mom and Dad and they are going to check to see if she can get some help with the schooling.thanks again,its means alot to me for all your help.God Bless you all.Jay4