Joined: 05 Aug 2003 Posts: 11 Location: Los Angeles
Guys With Lupus Posted: 08-05-03 13:30pm
Hello -- i'm a 29 year old guy living in
los angeles and was diagnosed with lupus
late last year. So far I feel really
fortunate because I have a relatively
minor case that has only affected my
joints and muscles (no internal organ
problems). While the bad days can be
really painful, i'm lucky enough to have
amazing doctors who diagnosed me very
quickly and started me on medications that
seem to help a lot (plaquenil).
Anyway, I know that lupus is much more
common in women, but so far i've never run
into any other men with lupus. I just
joined this site and i'm looking forward
to interacting with everyone who is
affected by this illness, but i'd
particularly be interested in hearing from
any guys who are in my situation.
Thanks!
|
Teri
New User, Becoming EHEALTHy
Joined: 10 Jul 2003 Posts: 10 Location: New Jersey
Guys With Lupus Posted: 08-05-03 16:29pm
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.
|
leucara
New User, Becoming EHEALTHy
Joined: 01 Apr 2004 Posts: 33 Location: Los Angeles
I'm In La Too Posted: 04-04-04 16:52pm
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.
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.
|
hunter
New User, Becoming EHEALTHy
Joined: 24 Apr 2004 Posts: 4 Location: Washington DC
One More Posted: 04-24-04 15:50pm
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.
|
danyul74
New User, Becoming EHEALTHy
Joined: 05 Aug 2003 Posts: 11 Location: Los Angeles
Posted: 05-13-04 08:06am
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!
