Hello everyone - i've recently been
diagnosed with dle and have not yet
received my blood test results from the
rhuematologist and want to know your
option if I have sle as well. In
september of 2004 on a business trip from
texas to jersey I noticed these rather
large lumps on the back of my head. I
was really worried so as soon as I
returned home I went and saw my family
doctor. He examined the lumps and
suggested I see a surgeon, I see the
surgeon he does a cat scan and says my
brain is fine and there is nothing he can
do. I go and see my dermatologist and he
does a biopsy and it tested positive for
lupus erythematosus. In the meantime I
have broken out with a raised red rash on
my left cheek coming out of the corner of
my eye and to my cheek. My dermatologist
said that it is a butterfly rash and gave
me some steroid creme to apply twice
daily. I've had weird things happen on
and off throughout my life and i'm
wondering if I really do have sle and the
lumps and the rash are the symptoms of
sle. Please offer some stories and
opions. Thank you! :wink:
|
slogirl
New User, Becoming EHEALTHy
Joined: 11 May 2005 Posts: 5 Location: San Luis Obispo
Posted: 05-11-05 13:35pm
I have been looking for a post just like
yours! I am in somewhat of the same
boat. I have rashes and strange spots
but no other lupus symptoms. Although my
blood tests and ana tests are positive!
So, I am also confused as to what I
have... Skin, systemic or both. Did you
ever get the blood results from your
doctor? I was nervous after I got those
because I really just wanted this to be
the skin type- if anything! But, a
positive ana test seems to indicate more.
I am so scared of getting sle later in
life... It sounds so hard to deal with!
I wake up every day thinking that I might
feel one of the other symptoms- it is very
frustrating!
|
lynnlove70
New User, Becoming EHEALTHy
Joined: 18 Feb 2005 Posts: 3 Location: Texas
Posted: 06-07-05 14:41pm
Hello,
sorry it has taken so long for my reply.
I did finally get my blood tests back and
it looks like for the moment I only have
the skin type lupus. I too am worried
about developing sle later on, but from
everything I have read, there is only a
10% chance that dle will develop into sle.
But every weird pain that I put off
before now makes me think twice. I
wonder is this pain a precurser to
developing sle? I have no idea, I know
that the plaquinel seems to work very
well, but when things are rough in my
life, the skin lesions seem to appear more
and the lumps in the back of my head tend
to grow larger and move around. I know
it sounds weird but the lumps get larger
and move from one side of my head to the
other. I've found that the sun seems to
make it worse, and i'm a very fair skinned
person so I try my best to stay out of the
sun.
I would think that if your ana tested
positive than you do have sle. My ana
was negative, if it weren't for the lumps
and lesions on my face and my scalp I
would have never known that I had lupus
because I didn't have the other symptoms.
Are there any others out there that have
just the skin type lupus?
Thanks,
kelly
|
slogirl
New User, Becoming EHEALTHy
Joined: 11 May 2005 Posts: 5 Location: San Luis Obispo
Still a Mystery Posted: 06-07-05 15:27pm
Now they are saying that I may be one of
the 10% of people with skin lupus that has
a positive ana test. My doctor did two
other tests that he says are more specific
for systemic lupus... A double strand dna
& a smith's test... Both were
negative. So, it is confusing. What I
am hoping is that I am one of the 10% of
peope with skin that has the positive ana.
My spots are beginning to fade, all I
have been using is a steroid cream on
them, no oral drugs. Mine definitely
seems to be sun sensitive too. I have
been staying out of the sun and using a
physical blocker with zinc and a sunscreen
with uva/uvb (parsol 1789). My doctor
says using both will get you the best
protection, and hats!! Still only have
the skin related symptoms though which is
so encouraging! Any more tests that you
have done? Sjogrens? Blood tests?
White blood cell? Anemia?
|
lynnlove70
New User, Becoming EHEALTHy
Joined: 18 Feb 2005 Posts: 3 Location: Texas
Posted: 06-07-05 15:39pm
I've been tested for all of the other auto
immune diseases and so far it looks like I
just have the lupus that affects the skin.
I'm lucky though, i've not had many
lesions, a couple of nasty ones on my face
at one time, the plaquinel is wonderful
for the lumps and bumps and lesions that
appear because of the lupus. The
plaquinel seems to keep the lumps at bay,
although I am having some nasty huge lumps
coming up behind my ear today, but i've
noticed that the more stressed out I get,
the worse the lumps and lesions tend to
get. If you have a positive on the skin
lupus, your rhuemy should put you on
plaquinel. It's well tolerated and
fairly inexpensive. It's been around for
many years and was originally used to
treat malaria, as it's an anti-malarial
drug.
Keep me posted on your progress, if you
can't get any answers, move on to a
different doctor. With lupus you have to
make sure that you're very aggressive
towards finding out anything you can
because so much is still very unknown
about the disease. You can not afford to
just wait around and see what some old
doctor says, you have to be aggressive in
your search for you, because you are
responsible for yourself in the long run.
Please keep me posted.
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