I’ve just been given this diagnosis by the Rheumatologist after my GP referred me for what they thought was Lupus.

As yet I have no muscle weakness and I gather this might not ever happen, but I have the other classic symptoms; heliotrope rash, gottron papules, arthritis in hands and feet, mechanics hands and at times overwhelming exhaustion.

I’ve had extensive bloods taken and a CT scan scheduled to rule out anything that may be behind the diagnosis.

Whilst the Rheumatology doctors were great, I do feel a bit left in the dark as to what I can expect from this illness as they seemed to discuss my symptoms in great depth but didn’t really give me any idea about the illness as such.

Having Googled it seems to range from the very mild to quite severe symptoms, I appreciate that no one can predict how this illness will play out but it would be great to hear from anybody else that also has this diagnosis.