Experiences with

Dermatomyositis

More recently diagnosed with Dermatomyositis. I have had a lot of falls, overbalance and get shaky. I get sore hands with red lumps and skin redness. I also have Chronic Kidney Disease. I wondered if anyone gets similar symptoms. Thank you

I’m still awaiting formal diagnosis. Tested positive for Anti Mi2, ANA 360 and had rashes across my neck, shoulders, eyebrows, behind ears and side of head since October. have had 12 weeks of steroids which finished and not now on any meds. My question is does your dm go in cycles? I feel like I have

I have a friend who was recently diagnosed with Dermatomyositis. Is this group appropriate for this diagnosis?

My husband has been in hospital since the 26th of May, he was a patient for 6 days before we had a diagnosis of dermatomyositis. He is currently in intensive care, he has a feeding tube and is bed bound.

I have dermatomyositis, raynauds and sjogrens which started around 5 years ago. I also have another autoimmune condition called Myasthenia Gravis which I’ve had for 30 years. They say if you have one autoimmune condition you are likely to get more. So here we are😀.

They have diagnosed dermatomyositis. He’s not doing well. They wanted to put him in an induced coma but he has aware enough to say no. The family are terrified and don’t know what questions we should be asking. Any insight would be gratefully received.

Because of my skin problem already I had access to my dermatologist and took pictures of my eyes and he had a look and said he suspects I have "Dermatomyositis" he did a test for this in 2021 as I was having skin problems. Came back negative.

Has anyone with Dermatomyositis taken out life insurance cover since their diagnosis and if so, who with please? I’ve tried a few different companies and it seems that no one wants to cover me! Thanks in advance 😊

Hi I’m new to this site, I was diagnosed yesterday with Dermatomyositis, I’m having trouble pronouncing it let alone the spelling so hope I’ve got it correct.

I have hashimotos, CLL and they are well controlled and /or stable It’s the dermatomyositis and a few other disorders that seems to flare up. I will be going to a naturalpath & nutritionist/dietitian.

I have hashimotos, CLL and they are well controlled and /or stable It’s the dermatomyositis and a few other disorders that seems to flare up. I will be going to a naturalpath & nutritionist/dietitian.

an MRI scan waiting results Tbh I am absolutely blazing I was going over my letters from different consultants and one was from my rheumatologist last year stating I have a positive Ana blood but I know this can be common in people and also a positive Anti mi 2 b positive and her words indicates dermatomyositis

josecifuentes

I don't even know where to start after "getting better" when I was early teens from Dermatomyositis life has been pretty good I had two beautiful boys after being told I couldn't have children.

I have auto immune disease, dermatomyositis with anti Synthetase syndrome and also urticarial vascultis. I am at a loss as to what to do. I would have expected as a minimum to have had the blood tests repeated. I’m speaking to my GP on Friday about this as he informed me by text.

Diseases that fall under this category include lupus, an autoimmune disease affecting the skin, joints, and internal organs, and myositis and dermatomyositis, which manifest as muscle and tissue inflammation. Two patients died of their conditions.

“Daxdilimab is also being investigated in other autoimmune conditions that are driven by high levels of interferon, including alopecia areata, dermatomyositis, lupus nephritis and systemic lupus erythematosus,” Podrebarac said.

RAISE STUDY recruitment (I have personally taken part in one focus group earlier this year) Are you a person with systemic vasculitis, systemic lupus erythematosus, inflammatory myositis (such as dermatomyositis or polymyositis) or Scleroderma?

Just been diagnosed with highly suspected dermatomyositis! Awaiting to rule out what is causing the weight loss and rashes! Currently having infection, autoimmune and cancer ruled out! Anyway, I have noticed all this is linked to what Drs are calling Endometriosis!

Hi All, I have dermatomyositis diagnosed in November and started on meds in December. High doses of prednisolone at first but have now reduced to 10mg. I’m also on 200mg hydroxychloraquine daily and 25mg methotrexate weekly.