[rojomi]

men w/ lupus are fairly rare I guess
I have had discoid lupus for about 6 years now. It's a drag. I have a close relationship w/ a supposedly reknowned dermatologist & staff who have at least been honest with me. They now inject steroids into the flare areas on my face & scalp-NOT fun. But it seems to help w/ the itching. On my last visit, the doc stated that it was unlikely that the redness/scarring would ever subside. As a male, I'm not that familiar w/ make-up, but use concealer and a hat to go out. I can't find the right match for my skin tone tho-it's tricky. It either goes orange, yellow or white none of which are natural. I miss the sun. I was an avid gardener & love the outdoors. Now it's pretty much off limits-the sun is basically not good for anyone other than the fact that it triggers melatonin. With discoid lupus, I feel like a vampire who can only survive in darkness lol. hello all and i'm told that lupus is now considered a manageable condition, rather than the chronic ultimately fatal disease it once was. It used to be just a word, but when you have it-it's dreadful. I remember when going out in public was a quick shower & a shave. Now, it's like prep for a space shuttle launch lol

 

[sam101360]

Welcome! I am not awfully familiar with Discoid, but I do know that Plaquenil is one fo the drugs used to keep Lupus in check. I have SCLE and when I am on 200mg 2X a day I do not have skin breakouts.

Seal has Discoid lupus, couldn't you just become egnimatic like he is?

I know about concealer, many times you will need to mix colors to get the right match for your skin tone. One of them has a dial on top that you can adjust the mix for a better match (I think its loreal but I am not sure). I wonder if your dermy could refer you to someone who can create a concealer to your skin tone....

I am glad you joined us, we do have several men who post here, I am sure you will meet them eventually.

Stephanie

 

[Joandublin]

Hi there and welcome to the Forum.

Yes indeed you are a fairly rare breed among Lupies Approximately one in ten people with Lupus are males so you are a bit outnumbered! Having said that there are a few men here on the site so I hope they will stop by and say hello. You might want to post something in the Men With Lupus Forum also as that might catch their attention quicker - men being less multi-taskers so to speak :wink2:

Those injections sound painful:worried: Sympathies to you.

I can empathise with the amount of preparation needed to head out every day. I dont have discoid Lupus but I am quite photo-sensitive so I need to lash on the factor 50 every morning. Then there is the morning tablet routine, the eye gel, the wrist splints, the shoe inserts, breakfast, getting the little fellas lunch ready, getting him to the school bus and then heading to work! and thats AFTER the shower! :hehe:.....ho hum

Nice to meet you
Take care for now
Joan:rose:

 

[Clare.T]

Welcome to the forum !

I am another whose skin has been badly effected by lupus, for 36 years now, so I can have total sympathy with you although I too have the subacute form which luckily doesn't scar. Skin lupus doesn't kill or physically handicap but it can just as surely ruin a life with profound emotional and social effects.
The proportion of men with discoid lupus is said to be higher than for SLE- off the top of my head, more like four out of ten compared with 1:10 for SLE.

I have often thought that the make up problem has to be more acute for men. I use Colorstay foundation which has very many shades and can be mixed. I didn't get on well with the camouflage purpose makeups like derma blend because they were too heavy for my very sensitive and damaged skin although I know a woman with facial discoid who used it very cleverly for the scars only with the Colorstay overall. If you get the Colorstay at a chain pharmacy they will replace it if the shade doesn't suit.

Surely your doctors have proposed oral medications such as Plaquenil and Quinacrine, for starters ? Those intralesional injections never did much for me. They were just like Chinese torture and the poor sweet doc hated doing them and apologised each time I flinched. It was a mix of Plaquenil and Quinacrine plus a tad of azathioprine that sorted mine out. I use a cream called Elidel instead of a steroid cream - there's another of a similar non steroid type called Procrit. They damage the skin less than steroid creams but do increase photosensitivity and possible slight risk of cancer so need to be used sparingly and only from time to time.

Luckily I never led an outdoorsy life so I don't feel too badly affected in that aspect of my life but sometimes I get quite overwhelmed with the yearning to bask and enjoy fine sunny weather instead of the anxiety.
I talk about getting ready to go out as "assuming human form". I get lots of looks with my hat glasses and coverups but can't let that bother me. I am so old now it doesn't matter but it is very very tough on younger people.

All the best to you

Clare

 

[rojomi]

Thanks

For the welcomes & info in the above posts. I had allergic reactions to both Plaquenil and Elidel. I WISH I had Seal's charisma, talent and $, but don't!
The comment about how much lupus affects quality of life is so true-I think back to when I didn't have it, or at least had no symptoms, and I am not the same person. I was speaking to a friend yesterday & mentioned it-I can't help but wonder where that guy (me) went and if he'll ever come back. I have some scarring which takes the form of patches of skin on my arms & scalp which have lost all pigment and are bright white. Thanks for the make-up tips; I don't look forward to buying the stuff in person & my stash is getting low, so I will probably do mail order or maybe check into consulting w/ a make-up artist.