Does anyone know about Dermatomyositis?

[LuckyMB78]

Very deflating appointment with RA consultant yesterday. I’ve tried 2 biologics so far and neither have worked. She now thinks it might not be RA at all but something called Dermatomyositis. I’ve never heard of this, they are running tests and I’ll need an MRI and a scan of my lungs apparently. I’m feeling worried, has anyone heard of this condition?

[oldtimer]

This was one of the things they looked for when I developed polymyalgia rheumatica as well as Rheumatoid Disease. It is very worrying but it's also unlikely. Have a look here for information: nhs.uk/conditions/myositis/

[LuckyMB78 in reply to oldtimer]

Thanks, I’ll have a look. My eyes are very swollen though and no one seems to know what it is 😕

[LoneEra in reply to LuckyMB78]

Oh gosh, that must be awful for you. I’d be pressing my medical team pretty hard for answers tbh and asking for an urgent dermatology referral x

[crashdoll in reply to LuckyMB78]

Hi LuckyMB78 , your eyes must be uncomfortable. I suffer from similar, they believe it to be ocular/orbital myositis. I’m under ophthalmology, have you seen someone or been referred? x

[LuckyMB78 in reply to crashdoll]

No I think I’ve been referred to dermatology but my appointment was very chaotic and confusing so I’m not sure. I know I’ve been put on the list for another MRI and they’ve sent my bloods to the Royal Free hospital in London to test for some rare antibodies. I’ll ask my GP if they can refer me to ophthalmology, thanks for the advice. Sorry to hear you are experiencing this too, have you found much relief?

[crashdoll in reply to LuckyMB78]

I find ophthalmology a bit more helpful when it comes to examining my eyes and symptom management but they defer to other doctors to prescribe medication like steroids. Steroids are actually the only thing that keep it somewhat under control. I use cool packs for comfort and it gives some relief. Worth a try? x

[hopegalore20]

Hi LuckyMB78, hope this finds you doing well.

I was diagnosed with Dermatomyositis just over 6 and half years ago.

This is quite a rare autoimmune condition. It affects both your skin & muscles.

It is a condition that affects your body with a severe itch from head to toe. You are exhausted from doing the simplest task.

On nice sunny days, you need to protect your skin with an exceedingly high sun factor as your skin is photosensitive.

Your immune system gets shut down to protect your body from attacking itself.

I am on Tracrolimus (Prograf), Steriods, and loads of other meds to try and give me some quality of life.

Some people are lucky, it can go into remission, that’s what I am praying for.

Like most diseases, people are affected in different ways, no two people experience the same symptoms.

I hope all works out for you.

Keep us all posted.

Good Luck 🤞

[Hidden]

Hi, I've just joined and noticed your post from 2 months ago. I was diagnosed with dermatomyositis two years ago. Have you been tested for myositis antibodies to confirm the diagnosis? Myositis is a rare autoimmune disease that causes muscle weakness, inflammation and skin disease. The myositis UK website will give you more information.

If the diagnosis is confirmed you will need a dermatology referral but you should also be treated by a rheumatologist who will be the autoimmune expert. I see both at a combined clinic.

[hopegalore20]

Hi LuckyMB78, I have just read your post and wondering how you are coping now? I have had Dermatomyositis for over 8 years and my journey has been quite traumatic. Let me know how you cope?