Dermatomyositis

It took the Gps 3 months before referring me to the hospital when to be fair the consultant diagnosed DM instantly. I am a fit 56 yr old man who previously had never had any serious illness. It all began with a high stress court case during which a rash appeared above my eyes which disappeared after about 4 weeks. Tiredness, breathlessness, lack of appetite, reduction in muscle tone, rashes on elbows, hands but the worst is my feet. They are completely inflamed, with cuts and ache at night. If only I could walk, the rest of me has improved with the steroids. 2 weeks on 60ml, but now reduced to 30ml. Disturbed by some of the stuff I've read on the internet. I am determined to beat this thing and all the tests should have been done by the beginning of February so that they can fine tune the treatment.

The syptoms of  Dermatomyositis seem to be very much like Lyme disease-what does people think?

Hi I so far Have been very lucky as well I went to my family Doctor over a non-related problem and my blood work showed an ANA so he sent me to a Rheumatologist at which time I broke out with a red rash on my face on my shoulders my chest and down my arms and my hands, He told me I had an autoimmune disease but not sure which one. He sent me to a dermatologist she took a skin biopsy it came back showing that I had dermatomyositis.  He ran lots of test so far it’s just the skin it’s not  done any damage to my muscles at all ,so I can only hope sent’s we caught it early that will be as far as it go’s . But I not know that much about it so not sure if it can just stop there. But that’s my hope so if anyone knows I would like to know like you if there is anyone that has recoverd or just had the rash and nothing else

I developed dermatomyositis at the end of January but did not know what it was until the end of April. I ended up being in the hospital for 2 months after feeding tubes, 5 days of IVIG, getting to where I could rehab. It started with the rash on my eye and then the muscle weakness and pain started. Mostly in my thighs and shoulders. Felt like pulled muscles everywhere. Then the rash started on the arms and things. I have bad scars now on my arms because I scratched so much...mostly while sleeping. I had to do rehab every day while in the hospital until they felt it was safe to go home. I'm still unable to work, take 40 mg of prednisone and 1000 mg of cellcept a day. I also have to take vitamin d and calcium. I get an IVIG infusion every 3 weeks. I get so fatigued every day, and I still always have pain. I also lost a lot of my hair in the hospital and that has been so difficult for me. It hasn't grown back at all either. I hate it. This has been such a difficult year for me dealing with all this. I'm only 35 and I have a 6 year old. Not being able to do what I used to with him has been the most difficult thing. I'm glad that there are others to discuss this with!

Hi, I am not doing good with my dermatomyositis just was diagnosed with breast cancer on December 8 and has surgery on December 16.  I go to the Oncologist tomorrow to find out if the cancer was in my breast only or has spread.  Will start chemo in January.  Tell your Mom to get tested for cancer.

I was just diagnosed with Dermatomyositis on March 9, 2016. I'm still rashes everywhere. Does the rashes every go away? I'm so tried of being read.

I was diagnosed with dermatomiositis 2 months ago, I also have ovarian cancer. ..which my reumatology had me in prednisone 80mg a day...I have muscle weakness and I'm on a weel chair. ..I had to quit my job, since I couldn't do it do to the muscles weakness, I also started with a rash in my neck, face and both of my arms, but with Zyrtec one pill. It when away...the rash is gone...

how has the progression of your DM gone?  I am dealing with mine and hoping to learn of any successes in dealing with the rash and scalp itch.

I've had it over 10 years with increasing skin involvement. There is no cure but some have remissions. I have patches all over my body which are dry, red and ache or itch. My scalp is very itchy daily and even with a steroid liquid and non-irritating shampoo, I haven't found anything that works yet.

my muscles fatigue if my arms are overhead, but I exercise regularly and stay active.

the sun can flare the skin, so use sunscreen and keep your skin covered. I like clothes from Coolibar.

i too am hoping to learn of coping strategies. I try to use natural cosmetics as much as possible. My face is very blotchy so I wear foundation daily as I'm self conscious.

I've only been on methotrexate for 8 weeks. So far no changes or improvements noted. I'm hopeful.  Good luck with your derm.

I was unofficially diagnosed with dermatomyositis about 3 years ago by a family friend who is a doctor. I'm only 29. After looking into how it would he treated medically and researching the medications used (their side effects etc) and not having insurance anyway, I decided to see how I could fare dealing with it naturally.

The dermatomyositis diagnoses came after being extremely fatigued for a period of months. I was going through a rough time (divorce) but am not prone to depression and I knew something was wrong. It wasn't just tired it was having to lay down to make it through the day just trying to get through work and caring for my at-that-time toddler.

The issues that began with my hands were what helped us pinpoint the issue. Around my knuckles it began to get really dry, red, cracked and itchy. When he saw my hands he knew immediately and showed me pictures in a medical book of dermatomyositis and everything aligned with that info.

He recommended for me to cut sugar completely out of my diet. I was already doing gluten-free and dairy-free. After two weeks of that, strict, so no bread, ketchup with added sugar, etc, I had a normal dessert and was awakened in the middle of the night with an AWFUL reaction in my hands. Obviously sugar was a trigger. For two years I cut sugar out and did very well.

Fast forward, the past year my eating has been awful and now I'm noticing major changes in muscle endurance. Sometimes my neck or legs are affected when driving. Even stirring dinner over the stove can become tiresome. My hands have the painful, raw areas again and I've been having muscle spasms.

I'm going to try to find/create a workout program and a healthy eating plan to get back onto. If any of you would like to do it along with me I think it'd be encouraging to track our results together and encourage each other, etc.