RE:Mick

[chantal]

Hi Mick unfortunately there is not much help for the rash that i know of, mine is so bad right now i didnt even want to leave my house for a while.. then it just kept getting worse, and now im just try to have the attitude that i dont care, though im sure you know i do. Whats helping my rash kinda have some kind of control is the cortisone cream.. but i was told i can use it forever, just make sure no more than twice a week. Now i know being a boy and all this might be taboo but you should really try cover-up even if u only used it on your nose so u wouldnt look like a drunk hehehe, they could match ur skin tone and nobody would have to know, i heard that bare essentials is a good product ive ordered some but it hasn?t came yet. I have also tried clineqe and MAC.. clineqe is good for sensitive skin, MAC?s okay too and mac has more colors u can match to. GOOD LUCK ! :) luv tilly :love:

[Clare.T]

Hi Mick

I can tell you what got rid of my subacute cutaneous lupus lesions which over 26 years inadequate treatment had got to the point of covering large areas of my face most hideously and was causing me constant great discomfort and emotional despair.

It can help with discoid and other forms of cutaneous lupus as well as with non organ threatening disease. Discoid lesions can leave scars which can be helped with laser treatment once the disease is stabilised

The first major improvement was the addition of 100mgs Quinacrine (UK Mepacrine ) to 400 mgs of Plaquenil

This brought an enormous improvement, 90% I would say, in existing skin, no new lesions and also in arthralgia and fatigue which I had up to then been told had nothing to do with the lupus.

I found the Quinacrine very energising and of course the boost to my morale was indescribable

When that plateauxed I tried adding 100 mgs Thalidomide- this is only for skin lupus.

The Thalidomide brought the complete disappearance of the remaining lesions , but like so many on this drug I got peripheral neuropathy in my toes.
I was in fact glad to have a clinical reason for stopping it because it also reduced me to a zombie like state mentally with severe short term memory loss.
I think I prefer brains to beauty.

The Plaquenil was then changed to Aralen ( chloroquine ) its stronger cousin and then low dose Imuran (azathioprine) which brought me into complete remission.

The remaining red areas were treated very successfully with forms of laser.

When I started seeing this brilliant specialist, I also started being ultra careful about sun exposure.

I occasionally used steroid creams especially in a flare or if I spied a new little lesion starting.
I have had no untoward side effects from these particular meds, either clinically or personally.

There are several other medicines that can be tried if the usual ones don't work.

I was quite surprised to learn recently that IVIg has been used successfully in some people whose skin lupus has not responded and that a few are trying Rituxan.

It must be harder for a man to decide to try make up with all the implications and the greater difficulty of application, with facial hair and generally coarser skin.
I think I would look for a camouflage expert - I never found the slightest help from store beauticians. There are special techniques in applying make up for camouflage that have to be practised.

By far the best regular makeup I have found is Revlon's Colorstay in the bottle.

I wish you the very best of luck

Clare

[chantal]

thats so great clare :D u give me hope :rolleyes: thanks !!! :love: