Recently diagnosed with Dermatomyositis

[Jazzy_hands]

I’m new here and I’m trying to make sense of Dermatomyositis and me. Was diagnosed in March and ended up in hospital for almost a month not knowing what was wrong with me. I’m on treatment now and feeling I’m getting my mobility and strength slowly back. I was wandering if anybody is losing their hair, I am and it must be due to the steroids. I really miss my hair 😢.

[Jo-Goode Administrator]

Hi,

Glad your slowly getting your function back with treatment.

I lost hair with treatment when first diagnosed with DM 25 years ago. I had a remission period of 13 years off treatment for DM and when I resumed immune suppression my hair thinned, but only noticeable to myself and those who know me well. I take the supplements of MSM and Biotin to help with hair loss.

lambertshealthcare.co.uk/vi...

lambertshealthcare.co.uk/ot...

Here is some info on exercise, and Myositis UK funded a study which showed that Creatine combined with exercise would build more muscle.

ncbi.nlm.nih.gov/pubmed/174...

Exercise sheet: 37fa343y5czt13hd4izqqhj1-wp...

Presentation video: youtube.com/watch?v=gPlWfz_...(Not working as expected?)

myositis.org/about-myositis...

Jo

If your on facebook there is another larger forum facebook.com/groups/Myositi...

[Lucy_4]

Hello, I was diagnosed with Dermatomyositis last year and I completely understand the hair loss.. I’ve been having issues with growing my hair back but the only thing that seems to get it thicker or length is castor oil

[periwinkle62]

I have had hair loss for years but it really ramped up just before diagnosis and now, with the meds - I've given up! Due to see the dermatologist shortly (finally) and am going to ask if an autoimmune condition can itself cause hair loss. If the answer is 'yes', I might at least get some NHS help towrds hair pieces

[Mishycake]

Losing hair like crazy. MCTD+dermatomyositis+polymyositis.

It’s definitely the steroids.