i have lupus of the skin, have feelings of isolation, please help....

[suki96]

most sites are for people with SLE,

can anyone please offer some advice for me,

i have flares, which manifest themselves as red/purple thickening of the skin, to my face, neck and arms. i have recently noticed i have bald/thinning patches to the back of my head.

i feel that i am wasting the dr's time by going in every time i have a flare or a symptom i think may be associated with skin lupus.

i feel so lonely

[missey]

awww don't feel lonely, there are plenty of lupie birds to keep you company and understand you and what you are going through.

I have both SLE and DLE, my skin involvement is classed as severe... but neither is nice. You know, you shouldn't think you are troubling your doctor, or wasting time...people go to the doctors for colds!!

There are things that can be given to ease your skin, are you on any meds?

Topical cremes are a bit hit and miss, but there is a very long list to try.

As for hair loss, I'm afraid I can't help much with that, as I have the same and it seems to be 'one of them things' But you can get hair to cover patches, have a goggle on it, I wouldn't suggest wearing all the time, as you don't want to get traction alopecia, but for a bit of confidence every now and again. Also wigs are great now, esp the real hair ones. {{{hugs from one lupie to another}}}

[Melinda]

I have SLE plus Subacute Cutaneous Lupus ( lupus of the skin). Lupus can be very isolating, especially when you having a flare. The best person to see about your skin and hair is your dermatologist as GPs are not always lupus aware. When my skin flared up the first time i was up and down the doctors like a yoyo. I suspect most of us are when we are in pain or worried. So please don't worry too much about seeing the doctor. Take care.

[Tabbie]

Lupus is so complex that it can be monumental to deal with it has so many layers that its easy to feel overwhelmed.you are not alone stay in the forum.

I'm feeling very isolated myself but I try my best to understand what im going through & somehow make sense of an illness that makes no sense..just hang on in there xx