Joined: 04 Oct 2003 Posts: 22 Location: South Carolina
Update And Questions Posted: 10-09-03 07:59am
Good morning and thanks for your help with
my last posting!
I have talked with the doc's office this
morning. The nurse said that my ana (not
sure about the levels) was negative, but
that the biopsy of my rash was positive.
So, it sounds like I have the skin form of
lupus. I go back to the dermatologist on
monday to discuss treatment.
I am not clear on how the skin form could
or could not relate to other symptoms.
Particularly fatigue, weight loss, and gi
problems. My understanding (from
research on the internet) is that the skin
form of lupus is at the mild end of a
continuum. I suppose I will get more
info when I see the doc again, but thought
someone here might could give me some
insight.
Thanks again for your help and support!
Obviously, what I have is not severe (like
others of you have...), but it's still no
fun to have a chronic illness!
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-09-03 12:15pm
First off, while it is common that most
lupus patients have a positive ana, I know
several people who have lupus and do *not*
have a positive ana.
With the test results of the skin biopsy
being positive, you could have discoid
*or* systemic lupus.
Therefore, I would advise you seeing a
dermatologist and a rheumatologist!
Hugs,
ladybrannon
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sue
New User, Becoming EHEALTHy
Joined: 31 Aug 2003 Posts: 25 Location: united states
Posted: 10-09-03 14:38pm
Before my diagnosis, I had a form of the
skin also - mostly on my forehead -but now
that seems to have been contained that im
on my meds. The other problems come and
go. I had the weight loss (which does'nt
bother me at all!), the hair falling,
which did bother me, and various other
things - which seem controlled with the
plaquaill that im on. Its always
something!!!!!
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willow
New User, Becoming EHEALTHy
Joined: 04 Oct 2003 Posts: 22 Location: South Carolina
Posted: 10-09-03 22:18pm
So, it rather sounds like i'm not
completely out of the woods with the sle
diagnosis (which I though I was or might
be after the negative ana). Does the
skin/rash biopsy that was positive for
lupus an item on the official list of sle
diagnostic criteria? If so, I would fall
into at least 4 of the 11 categories,
which suggests (or can diagnose) the
systemic form. This is a bit confusing!
I guess i'm asking if the symptoms that I
have (discoid rash, fatigue, hair loss,
weight loss, possible blood clotting
problems...With my hemhorrage after giving
birth) along with the positive biopsy
would cause a doc to diagnose me with
sle?
I am still having a lot of problems with
my tongue. When it flares, I can barely
eat. The prednisone is killing my
appetite (i know...It makes no sense!).
Plus, I keep getting an awful taste in my
mouth, especially when I wake up. The
only solution for the mouth problems that
i've gotten from the doctor is to use
magic mouthwash. That affects me by
making me nauseous...Still don't want to
eat! Do you find that docs will
prescribe pain medications to keep on hand
for these flare-ups? The nsaids and
aspirin make me sick to my stomach.
I'm going to stop rambling now. But, i'm
sure you're all aware that when your doc
says "lupus" it can become almost
all-consuming!
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-10-03 10:46am
Right you are, willow! Once you are
diagnosed with lupus, a lot of your
symptoms are suddenly "explained."
well, I can only speak from my experience,
but I can tell you how I do my
treatments...And let me be *very* clear
that this is done under doctor supervision
and permission!!!!!!!!!!!!!!!
I *always* have serious painkillers,
prednisone and insulin on hand. By that I
mean, if I feel myself going into a flare,
I immediately take 60 mg of prednisone and
began testing my glucose.
For pain, I have everything from aleve
(namebrand, otc) to morphine.
Seriously...
I also understand that I don't take
*anything* for pain unless it is
absolutely necessary to function. I think
there are people out there who think I
take them just to take them. I can assure
you that I do not, nor do I want to...I
was on oxycontin for about 8 months last
year...I went through three damn days of
*withdrawals*!!!!! That sucked. I won't
even go into the hell of what I went
through...
Your doctor *may or may not* diagnose you
with sle based on your symptoms...I would,
however, ask for more blood work to be
done. It is very feasible to test
positive for some of the blood tests and
not others.
As for your skin biopsy, I would sit down
and write down your questions and then
hand that piece of paper to the doctor and
insist on very clear, concise answers.
You also have the option of getting a
second opinion...Never a bad idea in *my*
experience.
I'll be thinking about you. Goodness
knows that getting a diagnose (sle or no)
is difficult.
Hugs,
ladybrannon
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HLP
New User, Becoming EHEALTHy
Joined: 12 Oct 2003 Posts: 22 Location: Southern Ohio
Lupus Posted: 10-12-03 14:13pm
I never got the rash on my face instead
there often
appears this lovely "butterfly" on my
chest. Before
being diagnosed I noticed it most often
when I was
extremely stressed out. So I thought it
was nerves.
One thing for certain.... When you are
allergic to
yourself it affects a whole lot of stuff
