After 15 years of having my rash peered at by various Dermatologists and having it pronounced as 'atypical of Lupus', I've finally been told, after two biopsies that it's JLI. I've still got sub-acute-cutaneous Lupus (based on auto-antibody titres).
Has anyone else been diagnosed with JLI on this forum? Also, what is the best sun cream/product to use and are tinted suncreams as good as the white stuff that makes you look vaguely scary?
snap, only mine was the other way round(jessners first and then diagnosis of sub-cutaneous lupus with systemic involvement.
I don't think they know what they are doing half the time. I had a skin biopsy 15yrs ago and they didn't find anything, even tho they mentioned Jessner's. In my book you've either got it or you haven't! I'm going to read up on it, but the little I know, there is no treatment as such.
I use Sunsense tinted matt sunscreen factor 50. I get this on prescription too.
Thank you. I will ask for this. My local Dr's has trouble getting my suncream - they usually blame the manufacturers.
Hi, I also am sensitive to the 'light' and I also use a factor 50 on prescription. Especially in the summer that is not enough. Neutrogena Age Shield Face SPF 110 might be worth trying, I get it through Amazon and is sent from America. Hope this helps.
Thank you. I will have a look at what you recommend.
I have had JLI for 10+ years. All that I've been given is steroid creams which occasionally just calm things down. More recently I've found that regularly drinking tonic water that contains quinine is better than the creams.
I found that standard suncreams + exposure to the sun can set off another bout or increase JLI but a brand called Green People does not. This brand is one that has the blue/white appearance when first applied to the skin though it does fade. It needs regular reapplications. There could be an ingredient in the popular makes that irritates JLI.
I sympathise and would be interested to hear if tonic water helps.
Thank you for your response Barney. I had patch tests at Addenbrookes because the prescription suncream was making me look like a beetroot. It turns out that I am allergic to parabens. This is in most sunscreen products. I hate the Geisha Girl look, caused by the titanium dioxide in sunblocks. I tend to favour tinted sun block. But it is difficult trying to find a product that is tinted, with high UVA protection and does not contain parabens!! I will buy some tonic water and report back to you.
I have also have been diagnosed with LTI Jesse's and love to travel. After many Sun creams potions and lotions I came across a boots brand called Soltan sensitive . It has been very good at keeping the rash at bay. It may be worth giving it a go. Incidentally I have a gin and tonic only when on holiday as I was told mosquitoes dislike the taste of the quinine in the tonic water. My rash is always worse when I am at home in cold wet Wales, it may be helpful for you to try one or both of the sunscreen and tonic water. Hope this helps I would be interested to know how you get on. Best wishes.
Thank you gma4. I have been doing some reading about sunscreens and there is a body of thought that say some are not as good as they say they are (don't protect you to the extent they claim). Also, cold pressed coconut oil is supposed to give you some protection. When I got diagnosed at the age of 40 (sub-acute Lupus), I was diligent about applying sunscreen, even if it blocked my pores and made me sweat profusely (summer). But now I almost can't be bothered as it's too much of a faff every morning. Having to plaster foundation on top of sunscreen so I don't look scary. I don't wear make-up unless I'm getting dolled up to go somewhere special (rarely). Due to my ultimate laziness, I have noticed my skin ageing more. Only positive is I'm getting some Vit D!!!
Does Lupus define your life?
Advice needed re what private blood tests I should opt for to try to prove to GP that my symptoms are probably lupus & need investigating?
Lupus diagnoses 
SJOGRENS SYDROME
Lupus Flare after 15 years of remission
