Hi, just wanted to let you know that my friends younger brother at around age 25 was diagnosed with the same type of lupus as you. He is 37 years of age now and is doing great. I think the doctor started him with prednisone. He was on it for awhile and I believe he is off medication now and is doing great. Just keep going for your blood tests and take care of yourself and I am sure you will do just as good! Hope I was of some help.
Just concerned.

Hi. I am in la too. It sounds like you are seeing a good doctor. I am seeing Dr. Wallace. It also sounds like your lupus is under control. Glad to hear it. I was diagnosed about a year ago. It's been hard to adjust to life out if the sun and sleeping 12 hours a day. Lots of weight gain. I think I can deal with it alittle better without the external rashes. I know however that I am doing better then a lot of other people so I am thankful. I havent met a guy here in la with lupus either but if I do I will let you know.

Shawna

Don't know if I spelled your name right but...Anyway...

Did you know charles kuralt had lupus?

Back where i've lived for the last 5 years I met a guy who had sle. He hadn't kept in touch so I am sorry about that. He's from durham or raleigh, nc.

Perhaps a support group might know of other men who have lupus that they can get you in touch with.

Good luck.

Clarebear

Thanks for your replies...Still haven't met another guy in my position yet!

Hi, clarebear here. I got this from the sc lfa when I inquired about a lupus group in myrtle beach:

"denmark-bamberg county

john folk 803/793-3442
he has lupus and would like to speak with other male lupus patients."

hope you can get connected.

Hi, you're not the only guy here. I'm 26 and was diagnosed with lupus and antiphospholipid syndrome a year and a half ago. I also have real problems with myalgia, and other stuff, but I haven't had arthritis. I've managed to talk to one guy who has lupus, but he is a bunch older and had a much more severe organ damaging case which was a lot different from my own. Though he did develop lupus at the same age I did, 25. He finally managed to get out of his flair, so there is hope. Luckily with prednisone, plaquenil, and coumadin treatment i've been able to avoid organ problems. I've visited the lupus foundation's headquarters here in dc and asked around about local support groups in my area, but none of them had any guys with lupus in attendance. We are a rarity.

Hey there hunter -- sorry it's taken me so long to reply. Work's been keeping me really busy so I haven't been logging on as much recently. But it's good to hear from another guy in a similar situation as me. I was diagnosed last year when I was 28. So far i've avoided any organ involvement. My primary symptoms are really bad arthritis-related swelling and pain in my joints, some muscle aches and some fatigue. I consider myself pretty lucky because i've managed to also avoid taking daily doses of steroids. I take plaquenil, quinacrine and an anti-inflammatory everyday. About once or month or so I flare up and go into my doctor for a intramuscular steroid shot. That usually does the trick and keeps me back in action for a while. I'm working with my doctor to try and find a treatment that will sustain my "flare-free" intervals for a longer length of time. I live in los angeles and am so fortunate to have a really great doctor who is recognized nationally for her work with lupus patients. I've contacted the lupus foundation looking for support groups as well without any success. Amazingly, southern california doesn't even have its own chapter at this point -- can you believe that? Anyway, I was glad to hear from you. It's cool to talk with and relate to others who are going through similar stuff, but it's particularly good to find another guy!