21,703 members17,199 posts

Newbie here. SLE sufferer.

Hi all.

I was diagnosed with SLE at the age of 16 (I'm now 30). At first I walked around in a daze and didn't know what to do or think. After speaking with my Dr I decided I wouldn't go on the tablets and I would try and manage SLE myself. As I write this I'm still tablet free. Don't get me wrong I've been close to being put on them by my Dr a couple of times. I try and do as I want when I want. I have altered my diet over the years and take a couple of supplements and that's it. I go to the gym 4 times a week and even use the sunbeds.

My worst time of the year is fast approaching. Winter. This is where I struggle. Bronchitis and Pleurisy non stop not forgetting the tiredness and joint aches, mouth ulcers and dry eyes.

So that's me in a nutshell. Feel free to get in touch for a chat or a question for me.

Here's to us all (fingers crossed) to having a relative flare free winter period.


8 Replies

That's me on the medication!!!!!


Have to ask how can you go on a sunbed?? Please sorry to ask xx


You must be one of the luckier ones, I cant function without my meds........


At disco queen. I was once told that an occasional 3 mins on them helps with my mild skin rashes.

Since I've used them I don't have the rashes but they do make me more lethargic so I use them for a while then stop.

I seem to be one of the lucky ones as my skin doesn't seem to flare. I just get other symptoms in stead.


Lucky you, if I go out in the sun, I get blisters which pop and bleed, then my skin is sore for ages. So I have to cover up whenever I go out.

Good luck to you



my doctor haven't prescribed me any medications as he thinks i have mild sle.But there is no point in avoiding medications costing irreversible organ damage.i have already got colitis and wondering which organ will be the next target...


My skin never seems to have been bad with SLE so I think I'm one of the luckier ones.

I don't doubt that one day I will have to give in and go on the meds but until then I'm trying to manage on my own. Don't get me wrong its not easy and there are days when I could give in but I try to keep going. When it comes to pain I can only rely on ibuprofen as I am allergic to the opiates family.

I had issues with my liver due to a medical problem caused by my SLE and some tablets I had to take but by seeking a herbalist and a change of diet the problem rectified itself after nine months of Liver function tests every 2 weeks.

In a way I've always kind of pushed SLE to the back of my mind and pretended its not there. Although when I was pregnant that didn't work.


Wow, sunbeds.... if I forget to wear my factor 50 suncream (inside) at work I end my shift looking like a lobster!!!


You may also like...