New diagnosis

[Dressgirl52]

Hi there recently been diagnosed with lupus tumidus and Sjorgens syndrome - struggling with getting medication right at present - I am experiencing a flare up which has made my eye lid swell plus rash on forehead - very painful - consultant upped steroids to calm things then reviewing my treatment - any advice please this is all very new and scary to me !

[Krazykat26]

Hello Dressgirl 🤗Welcome to the group!! You're not alone there are loads of us here on this site.I have to admit I've never heard of lupus tumidas so had to have a Google 😹

I was diagnosed with Subacute Cutaneous Lupus Erythematosus SCLE in 2017 and have recently had Sjogrens confirmed although I've had it since the start of my lupus journey.

I'm sorry to hear that your scared but tbh that is pretty natural I think. Lots of unanswered questions currently I should imagine.

This forum is kind friendly n supportive and we have a few giggles along the way too!!

It does take a while for the medication to work n it can take even longer to get the medication right..much of it is trial n error unfortunately. However it can be done and you can live well with lupus as long as you take the necessary precautions.

You are probably light sensitive with that diagnosis..I am too n I have to cover up in sunlight..big wide brimmed hat..sunscreen n factor 50 clothing help with me. If you would like to find out about photosensitivity if u visit lupus UK website n scroll down to Eclipse there's lots of info on there.

I've learnt more about lupus on this forum than I have from any of my doctor's!! Keep posting any questions that you have and there's always someone who can relate..the support here is fabulous. 🌈😽😽Xx

[Ilovepuppies88]

Hi dressgirl, welcome! I'm totally with krazykat26. Protect your skin from the sun is a good start. It takes a little time to get used to medication and what really works for you. We are all here to support each other and give advice, you are not alone in this journey . I've neither knew what your type of lupus is, I've been diagnosed with SLE and steroids didn't work a great deal for me but hydroxychloroquine did! Your medication will fall into place, hopefully the steroids will do the job, but if you feel like they are not speak to your doctor, make sure to tell them everything. What worked for me is keeping a diary of my flare ups, even what I've eaten certain things to see where the triggers were. It will be all OK with little time. I for one if I see any changes in how I feel I am straight off to the doctor, putting it in my diary. Do not feel afraid to ask for help, because I did initially. All the best x

[Dressgirl52 in reply to Ilovepuppies88]

Thanks for that - can you recommend any particular sun cream ?

[Ilovepuppies88]

Hi dressgirl. I use murad spf45 mattifying cream for super oily skin.