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Hello! My doctor told me that I have the following problem. What I want to know something basic about it. I have dermatomyositis disease. In case that I am not enough informed about it I wish to know for my life expectancy. How much is dangerous this disease? Is it necessary some special treatment or medic? Thanks for your cognition about this.

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Hello louie1165,

First of all the condition you have been diagnosed with is autoimmune disorder which means that your own body is attacking healthy tissue and cells. Dermatomyositis is an inflammatory muscle disease which first affects the skin and muscles but it may affect other organs as well.

This condition can affect all people of all ages but it is proven that it affects females twice as often as males.

Treatment for dermatomyositis focuses on muscle disease and skin symptoms under control.

When it comes to the prognosis and life expectancy of this condition it varies from all sorts of things. First of all most of the individuals respond very well to the treatment and sometimes they can experience relief from all the symptoms. But in some cases it is possible to develop cancer and the life expectancy is getting shorter.

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Hello louie1165!
I'm a parent of a child who was diagnosed with the same disease in 2001. We've had many challenges and treatments throughout the years and today she's living life to the fullest at the age of 25. Feel free to e-mail us at any time if you have any questions.
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Hello Teestarr

My mother is diagnosed with the same and am on the verge of losing her. How can i help her? The hospital has informed us that they have done their best.

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hi i too have a mother with this disease. the doctors dont seem to be doing enough for her at all! it was caught 3 years into the disease and shes in constant pain now...shes been on 8 steriods a day ffor the last 18 months and has started losing bones due to osteoporosis so only now have they started reducing them. how is your mother now if u dont mind me asking?
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My 82 year old mother is also suffering and we have no answers.  They keep on giving her steroids which make her feel great and then two days later the side effects are making her skin a mess and she's miserable.  She keeps on getting the gout also.  Does anyone have any idea what the heck this is?  I work at a hospital and I've been researching it and I can't seem to get any answers.

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My wife is using red light therapy in a red light bed to control the pain, it is working amazingly well. No steroids either. It took a little while but we finally bought our own, She uses it daily 660nm bulbs are working very well, but but the 620nm bulbs at the tanning salon worked well also, just slower results.
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I have dermatomyositis polymyositis an scleroderma sclerosis I was diagnosed 2 years ago finally by ucsf before that I had a rash then it started to itch scalp arms back etc... went to a dermatologist they thought I had lupus but finally was referred to a rheumatoid arthritis doctor they took a skin biopsy off my wrist sent it to UCSF and they found out that I had that triple whammythey put me on 60 milligrams of prednisone at first but it caused bone marrow death and both femurs so they tapered me off as quick as they could now I only take 10 milligrams each morning and I take folic because I was on methotrexate self injecting once weekly I stopped the methotrexate chemo about 15 weeks ago because I got that bronchial infection and because chemo suppresses your immune system and I needed to get on antibiotics anyway to make a long story short in September of 2013 I was put on infusions of rituxan 1 infusion 15 days later the second they have to space it because it is a strong drug. they do premedicate you before then fusionI didn't have any side effects except for chest pressure but my stats were good now it's 2014 and I start up my second roundthis MarchI will say one thing I could not get out of bed I could barely get off the toilet actually I could not all I could not get off a couch I could not bend down I could barely walk I could not climb the stairs it was horrific this happen overnight for me just a rash and then I was just down and I'm a very physical person but this drug has helped me tremendously along with a low dose at 10 milligrams of prednisone each day. I would suggest you look into your options they may suggest IVIG don't do it do if you can the rituxan it also helps with the skin whereas IVIG does not all that does is add more antibodies to your body from healthy donors. but with Rituxan it also helps to fight of cancers that can come inanyway I hope this helps you it's a battle there is no cure but there is control and we can live a long life that have to do blood work and keep eye on organs etc.. feel free to contact me because been through a lot I was almost paralyzedI wish you all the best I know what it feels like it is not a picnic
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I just found out I have this. What treatment worked for you?
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What are you taking for this?
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Detoxing your body is the beginning of healing the body. Since autoimmune diseases also can have dietary restrictions, you need to ask a doctor and nutritionist about which foods to avoid, if applicable. Also, there is an ingestible clay that detoxes the body and can be used externally to heal the skin.

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Hi my name is Melissa I'm very interested in your story my daughter is 3 and has been diagnosed with these disease
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I have the disease going on 2 years now. I find it difficult to manage as well in the beginning. You have to find as much information to help you to adjust to the condition. My body started to shut down due to overwhelming tiredness and fatigue - it took doctors 6 months to find the cause to the illness after blood, muscle and biopsy tests and MRI. Stiffness in the neck, shoulders and upper arms, inability to raise them over my head without pain and aching discomfort is very common. Walking became difficult, sometimes losing balance and falling down and being totally exhausted after walking one block. I became paralyzed because the leg muscles atropied and reduced due to muscle damage. Three months of physiotherapy, prednisone therapy, massage therapy and electrotherapy all helped to recover. To maintain health, exercise - walking, recumbent bike - have also helped. Change of diet to an anti-inflammatory diet has also been beneficial.  I inject Methatrexate once a week and take folic acid six days a week except for Methatrexate days. Omega-3 and CQ10.

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Hello, my name is Maria I was diagnosed with juvenile dermatomyositis when I was four I am now thirteen and hopefully will be in remission soon, your family is in my prayers I wish your daughter the best of luck as far as treatment goes :)
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Thanks for your input. I was diagnosed last October and also given 60mg Prednisone, tapering off and because of weight gain, swelling, etc,, put on methotrexate of which I take 8 pills once a week. My energy level still isn't up to par. At times I feel fortunate to lift my arms though test show my muscle strength is good. Go figure. They also have treated me for Lupus for most of my life but now say it is fibromyalgia. My hair is thinning out, skin condition has only slightly improved. I'm frustrated and you are so right. It is not a picnic. Thanks again!
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