New member here , recently diagnosed with Dermatomyositis 😐

[Mark_A_UK]

Hello members , i'm Mark , i joined here at the weekend , at the end of May 2017 a bright red rash started covering my face ,which i presumed was sunburn as i work outdoors 50% of my day however as the weeks passed it didn't go away and got worse. I visited my doctors , i was prescribed some antihistamines which didn't work , after seeing another doctor who suspected Dermatomyositis i was reffered to a Rheumatoligist , after undergoing countless tests on my blood nerves and muscles i was started on hydroxychloraquine (400mg/day) 2 weeks ago and started on prednisolone (30mg/day) 1 week ago. After reading lots of posts and replies over the weekend i thought i'd introduce myself , i was quite worried as my joints and muscles seemed to be slowly getting more painful , i've never been ill in my life before this , only been to the doctor twice in the last 20 yrs , both times just to have my ears syringed , looking for answers and advice on how to get through this , i will be 49 next week , sorry for going on a bit 😕 , wasn't sure what to say really , thanks for reading ☺

[Eliotf]

Mark, I am so sorry that you are going through that. The best advise (from my viewpoint) is be aggressive with the doctors and question everything and do your own research. As you will start to find out it is different for all of us. There are some good facebook groups for DM to gather information. Do a lot of reading.

[Parkerc]

Hi Mark, I'm really sorry to hear you're so unwell. I haven't been diagnosed with DM but like you, I have a bright red rash on my neck and chest, as well as itchy patches on my face, hands, back, torso etc. I have had lots of muscle pain for the last twelve years, but the rash only for about 18 months. I have had to fight with my doctors to have an EMG (which is scheduled for next week) as I always have normal blood results. They say I have fibromyalgia and eczema. I was prescribed hydroxychloroquine last year and took it for about six months, but it didn't help at all so have been taken off it. I can't really offer any advice except to say try and stay positive and focus on what you can do, not what you can't.

[Jo-Goode Administrator]

Hi Mark, Sorry to hear of your diagnosis and joining our rare club. I was diagnosed aged 25 with aggressive Dermatomyositis 24 years ago, but in this time I have had a period of 13 years Myositis remission off medication; relapsed a few years ago but doing OK with treatment. My advise would be to ask how much experience your doctor has treating Myositis and if you don't seem to be responding to the treatment you have been placed on seek a second opinion. We have a number of Myositis specialists and clinics in the UK, there is a list of some of them on the pinned post, or I'm happy to advise of your nearest.