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Discussion Starter #1
Hi everyone

I've just been diagnosed with DLE and have taken to wearing headscarves a lot!

Just wanted to say hello.... :)

Best wishes

Amelia
 

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Hi Amelia and welcome :welcome:

Great name, it was my Grandmothers name :bigsmile:

I'm sorry to hear of your diagnosis but you have come to the right place for support and information. Has your doctor started you on any medications yet?

love
Lily
 

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The Other Illinois Tammy
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Amelia,
Hi and welcome to the site. What a pretty name by the way. I can only guess that you have hair loss. I want to say that we should wear the hair loss in pride as we are fighting a world wide battle and winning everyday we can get out of bed. Someone on this site said in a post that lupus has made them appreicate the little things in life that everyone else takes for granted like driving a car. That is the best part of lupus, it makes you appreicate those little things that even we ourselves took for granted before the lupus. I hope that you are doing well and feeling well.
 

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Discussion Starter #4
Hi Lily and Tammy

Thanks for the welcome and the compliments! I like this site already ; )

I've been kind of muddling along but decided yesterday that it would be a good idea to stop feeling like i'm the only person in the world with this crazy disease!! I have DLE and I've seen so many worse cases than mine (that's what google does!)... My new headscarf look is mainly to cover the red lumps on my forehead and a little bit of hairloss... my hair started to fall out on the crown of my head but i decided that it wasn't going to happen and it stopped! The bit at the front is still missing though ; (

I started taking Plaquenil about three weeks ago, which was odd at first with some freaky side effects but now it's ok... no real change but i have to be patient.

Good to be here, being alive and starting new trends in head gear ; )

Best wishes

Amelia
 

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Hi Amelia,

Welcome to the forum.

Plaquenil can take some time to kick in. In my case it took 6 months before I started to see any improvement. Hopefully it will be sooner for you.

Scarves are great, but if you are going to be out in the sun you might want to consider something with a wide brim. The sun can trigger flares for some of us. It doesn't hurt to take extra precautions. A good sunscreen is a must too.

Take care,
Lazylegs
 

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Discussion Starter #6
hey

hi

Thanks for the advice... i live in Australia where the UV is pretty high but it's winter here thankfully, i have invested in a 50+ hat and a UV umbrella... i am now vampire like! My specialist thinks, as do i, that my lupus was trigerred by the massive studio lights we have (my hubands a photographer)... the bulbs are massive and emit loads of UV - i sat with them in front of my face all night - the photos were great but the after effects not so much!!!

Hopefully i can get this undercontrol before the summer kicks in again... it reach 46.7 degrees earlier this year and the UV was off the scale....

thanks everyone

amelia
 

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Hi again Amelia :) Another Aussie here, I'm in NSW.

Even in winter I wear the sunscreen/hat the whole caboodle. There's still a lot of exposure to rays even in our winter.

love
Lily
 

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It was nice chatting to you yesterday :)
I think an umbrella is very handy indeed because you can angle it. Talking about their use in the far east, I noticed that the Duchess of Cornwall was using one on a recent vists somewhere hot and sunny. There's also the well known TV presenter of a property show in the UK, Kirstie somebody, who was using one at one stage. I was very taken with photos of a lupus walk in a south east asian country where they were all carrying umbrellas with a lupus slogan on. What a bright and eye catching idea.

All the best
Clare
 
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