iv got disc lupus an have had it 4 many ov yrs,my face is really bad i have the butterfly wings under both my eyes and a lot ov red circles

[lorraine31]

on my face i get make up off the brc 4 this and dermavate cream but it does not work 4 me,was asked the last time if i wld lyk 2 start a anti-malaria drug,is this any use?i just suffer in scilence cos i think the ppl i have seen are no use,can any1 advise me wat 2 do or where 2 start seeking help,thanks x

[Melinda]

I have SCLE which is a different type of lupus of the skin. It affects the body rather than the face. I was already taking anti-malarials for SLE, and when i developed SCLE, they just doubled the dose. I'm also taking 5mg of prednisolone. Anti-malarials are the standard treatment for lupus. They have been very good for me and i believe are one of the safest medicines. I have a repeat prescription for betevate cream for my skin, but i hardly ever use it because all i have is a few red spots.

[Tophat]

Mepacrine is an old fashioned anti malarial which can be used alone or with Plaquenil. It can be very beneficial for the skin. You sound pretty fed up. I have SLE not Discoid and am no expert on Discoid but I do feel for you-the psychological effects of Discoid are not pleasant.

xxx Tophat.

[HermioneG]

I am truly sympathetic since I have had SCLE over most of my face for many years. I can't understand why an anti malarial hasn't already been suggested. Plaquenil is the one most often used these days. There should be some improvement within a a few weeks. The usual therapeutic dose is 400 mgs a day but take less at the start so it' less likely to cause tummy upset.

Plaquenil is all most people need but if it isn't a dramatic improvemnt can be achieved by adding the other anti malarial Mepacrine to it. They work together.

For anybody with DLE or SCLE who hasn't been prescribed an antimalarial, read up about it and ask your doctor why not. Thousands of people have taken antimalarials for for many years for lupus and of course for malaria.

Skin lupus won't kill but it can ruin lives.Ask your GP for a referral or contact your dermatologist. If they donl;t know how to treat skin lupus you will have to tell them! Don't let them neglect you it is your right to get the best treatment there is.

HG

[Melinda in reply to HermioneG]

HermoineG i didn't know SCLE could affect the face. When mine was at its worst it covered most of my body, my neck up along the jaw line and my ears.

You are right about skin lupus, it wont kill you but i found it far more distressing than when it just affected my joints. In fact i felt sucidal. Although its not bothering me at the moment, i know how quickly it can go out of control.

Lorraine31 Don't suffer in silence, thats what i did most of the time. It took ages for them to refer me to a rheumatologist and give me the proper treatment.

[HermioneG]

Oh I am very sorry if it sounded as if I was saying skin lupus was less important because it wasn't going to be fatal! That is so far from reality. But the fact remains that some people do have that attitude. I was even told by one doctor that I should count myself lucky not to have ***that*** affecting my inner organs. I have been told by people with SLE and no skin involvement at all that I am lucky. I have read many posts by people affected with skin lupus, saying that they thought they were "vain" to be concerned by their appearance.

If I was paid for each time I have heard and read trivialising remarks that "beauty is only skin deep" and "books shouldn't be judged by their covers" and such like, I would be a rich woman. If I had money for all the idiot comments well -meaning people have made over the many years, I would be very rich. If I had been paid for all the plain stupid, nasty comments made by rude ignorant people I would be a millionaire Not counting the taunts my children were bullied with about my appearance and who knows how many turn- downs because of my appearance however well I tried to camouflage it.

My GP was quite appalled when he saw photos of my face without make up. I was very pleased because his almost disbelieving shock showed that my make up is quite effective, which I have always doubted, however much reassurance friends and family have given me.

I'll continue tomorrow!

HG

.

[tracyxx in reply to HermioneG]

what make up do you use?

[Hidden]

Hello Lorraine, as luck would have it, I went to the dermatologist yesterday. I've had Lupus for about 7 years and although I have had the odd scaly bit on my face in the past, hadn't ever had truly bad facial involvement until recently (and as a result I wouldn't ever underestimate its awfulness). It seemed to be exacerbated by cyclophospamide, and the rheumatologist and dermatologist were quite baffled. Right now, my skin is so sensitive that ANY daylight on it seems to start the inflammation - which is very difficult to manage.

Anyway - the point is - he offered me a week's course of dermavate to try to 'blitz' the redness, and suggested that a longer term solution might be hydroxychloroquine, which I know is an antimalarial. He said that no one is quite sure how it works, that it is quite a mild drug without a lot of unpleasant side effects, and that it seems to be particularly good for the skin.

I haven't taken it myself yet - and I am just reporting what the dermatologist told me. But maybe the information is useful for you.

Can I ask you a question back?

You said dermavate hadn't worked for you. Can you tell me: has it thinned the skin on your face?

[Herb]

I have SLE and have not had the rash on my face for years but I never wear any makeup when having doctors appointments, they need to see us in the raw.

I think you should give the drug a try, you may have to wait a few months to see if it is working but you could notice an improvement within a few days.

The anti malarial is recommended for skin lupus.