Dermatomyositis

[Stills]

any experience anyone? I’m not sure if I have this but after the last two few years of new symptoms and malaise and no additional diagnosis to Stills I’m doing my own research.

[DorsetLady PMRGCAuk volunteer]

Can’t help on this sorry -

maybe try this forum -healthunlocked.com/myositis...

On checking previous post to see if you’d asked on another forum saw you’d asked about finding saved posts - had you been on here this would have helped - but guess it’s sorted anyway 😊

healthunlocked.com/pmrgcauk....

[Stills in reply to DorsetLady]

Thanks

[Stills in reply to DorsetLady]

Struggled to find the posts of interest I saved over the months, sometimes I just email myself a link to them instead and keep them 😅

[DorsetLady PMRGCAuk volunteer in reply to Stills]

When you get an email notification from HU - underneath the Reply Box there should a message saying -

See all my Saved posts > in blue type - and if you tap it takes you to them...

[stiff19]

experience of thinking this as you ,symptoms and no diagnosis leads me to research too 🙏🙏

[PMRpro Ambassador]

You do have to laugh sometimes - I have heard of it but went to brush up on it and Mayo says "distinctive skin rash" but appear not to have heard about a picture painting a thousand words!!!

HealthCental OTOH have

healthcentral.com/condition...

and my favourite dermatology site - the NZ one

dermnetnz.org/topics/dermat...

dermnetnz.org/topics/adult-...

[Stills in reply to PMRpro]

Thanks, I’m maybe grasping at straws. I’ve posted on Lupus as well. Everything I read is leading to AI/RD connected so it seems to add up given I do have a diagnosis of Stills. So many symptoms overlap with other conditions though. My thyroid test was inconclusive so given the difficulties getting a correct diagnosis and treatment for that condition (as reported by posters on that site) I’ve abandoned that. I have read that steroids seem to be the base treatment for nearly all of these types of conditions. I wish I could try a low dose for a month or so to see which symptoms ease.

[PMRpro Ambassador in reply to Stills]

Yes, I saw that. Do any of those images look like your eyeshadows?

[stiff19 in reply to Stills]

I too had thyroid test which I had high tsh but no interest from docs there and I had high dose steroids which helped some ,I think steroids are scary but worth a try , ive had many of the rashes and signs/symptoms still do but steroids did help some at the time