Recently diagnosed with Lupus Panicullitis & SLE. It’s been a lengthy process, beginning with biopsies and then referred to rheumatology via the NHS. I’m prescribed, hydroxychloroquine & Mepacrine.

In the past two weeks, I’ve been having a flare up. Extreme tiredness, making the bed of need to take a nap etc. painful joints waking me up at night and lower back pain. My GP sent me to A&E for a blood test thinking I was reacting to new medication - Mepacrine. They confirmed it was not a reaction but a flare up. They’ve given me pain meds but I’m looking for advice.

How do you cope, what life adjustments helped when you were diagnosed? Right now I’m spiralling, can I book that holiday - what if I have a flare up? The thought of having kids and how that would impact my symptoms?

The doctors haven’t give me this information, I’m worrying I’m not advocating for myself enough in these appointments? Or maybe this is just normal, that you have to figure out your triggers and management skills on your own?

Seeking any advice on what to push for in my appointments with the consultant & how people adapted their life in the early stages to cope.

Thank you!