Joined: 04 Oct 2003 Posts: 22 Location: South Carolina
May I Still Gripe? Posted: 10-19-03 16:20pm
Hello, folks. I went back to the
dermatologist and they said that I have
the skin type of lupus. Can I still
gripe even if I don't have sle?
The doctor still has me on prednisone
(20mg every other day for a month), skin
cream, and mycelex troche for my mouth.
My mouth still hurts and a lot of mornings
I wake up with more sores on the roof of
my mouth, inside my lips, and my tongue is
still covered in bumps. The
dermatologist just says that I should use
magic mouthwash or liquid benadryl on it.
Yuck! I don't think they understand how
miserable I have been with the
mouth...It's been three months since it's
been normal!
Then he says "no more sun." I live in
south carolina and love to bake myself!
The sun is like therapy. Now i'm
supposed to wear sunscreens and hats and
stay out of the sun. Plus, I have
outdoor animals that I enjoy spending time
caring for and playing with. I have been
a bit depressed about this, but I did buy
myself some expensive lotion with
sunscreen and cute hats. I look
ridiculous in hats, though!
I have ugly scars on my hands, arms, face,
and back. And I assume this is just my
first round with it! The rash on my back
keeps trying to come back. And did I
mention my mouth???
Then, to top it off...My supervisor gives
me an annual review that makes it sound
like i'm a slacker. She knows that i've
been sick and going to a lot of doctors to
try to get better. She always tells me
to take care of myself and my kids...Then
gripes that my work has been "slipping a
little." I dread going back to work (i
cried in her office, just to make myself
look a little flakier!).
Anyway, I know I don't have to deal with
what you all are managing, but I don't
know where else to gripe and have someone
understand!!!
Thanks!!!!
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-19-03 16:39pm
Gripe away! We certainly understand!
Hugs,
ladybrannon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-21-03 15:52pm
Willow:
i was wondering, since you don't have
systemic lupus, would you be willing to
post what the doctor told you were the
differences of discoid lupus to systemic.
I have been thinking that we should try to
do a sticky post about that...
Discoid
systemic
drug-induced
neonatal
what does everyone else think?
Thanks!
Ladybrannon
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willow
New User, Becoming EHEALTHy
Joined: 04 Oct 2003 Posts: 22 Location: South Carolina
Posted: 10-21-03 19:17pm
I think it would be a good idea to have
some information about the different types
of lupus. I have found several sites
that describe the different types (lfa,
webmd, etc.).
My understanding is that the "skin" lupus
works the same way as sle, but attacks the
skin. The discoid lesions, other skin
sores, mouth sores, and hair loss seem to
be the main symptoms. I have a lot of
fatigue and weight loss and i'm not clear
if that is related to the lupus. I had a
terrible day on friday and my rash that
had pretty much cleared up came back for a
couple of days on my back (so i'm
theorizing that stress might play a
role).
The dermatologist is providing treatment.
He says my ana is negative at this time,
but it will need to be tested every six
months. He did a biopsy of the discoid
rash and it was positive for lupus. He
has not done any other lab work and I
haven't actually seen the lab results.
I'm not sure if it would be wise to take a
look at the labs with my family doctor and
see if more labwork would be a good
idea...Just to make sure.
Right now, I am taking prednisone and
using betamethadine skin cream. He has
given me mycelex troches for my mouth
sores...It finally seems to be helping.
He has said to wear sunscreen all the
time, wear a hat when i'm outdoors, and no
more sun...Ever.
That's pretty much been my experience and
maybe some of the information you were
looking for. I've found that pretty much
every sore I have leaves a scar and it's
been pretty frustrating to deal with.
Like I said before, I know i'm not dealing
with what someone with sle has, but I
think being diagnosed with any type of
lupus is fairly traumatic. I understand
that about 10% of people diagnosed with
skin lupus eventually develop sle. It
has helped to be able to get my feelings
out on this board rather than barraging my
friends and family!
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SAM43
New User, Becoming EHEALTHy
Joined: 22 Oct 2003 Posts: 34 Location: Florida
Scle Posted: 10-22-03 09:25am
Good morning:
i am new to the site and fairly new to
lupus, I was dx in june with scle...This
is lupus of skin only. However unlike
discoid lupus, this is usually a non
scaring rash.
I have many of the other symptoms of sle,
fevers, mouth/nose/vaginal sores, swolen
glands (from epstein barr???), arthritic
pain and lethargy...Oh yes, let's not
forger the lethargy. They say this is
fairly common with acle and scle....How
fun!
I think it would be wonderful if you
posted the different types of lupus...Sle,
acle, scle, dle, tumid, natal and drug
induced.
I am sorry to say you will probably not
find much infomration on the skin types of
lupus as I have been looking and
information is minimal at best.
From what the dr's tell me the difference
between dle and scle besides the type of
lesions, would be the potential for a
positive ana...Dle almost always tests
negative for ana and only about 10% ever
evolve into sle, scle can test postive on
the ana and only about 20% ever evolve
into sle and acle will usually test
positive for ana and most patients evolve
or already have sle.
Discoid lupus shoud be treated by topical
and interlesion steroids....If you do not
see an improvement, you should be asking
your doctor about plaquenil
(anti-malaria), this takes time to see the
effect - anywhere between 2 and 6 months,
however it does reduce the severity of the
sores and can reduce sun-sensitivtiy.
For scle plaquanil will work similar to it
does in sle and help with the joint pain
too....
I'm confussed! I have the sle type lupus,
but most recently i've been getting skin
rashes. Just yesterday I woke up to a
rash about 2x4inches on my lower rib cage.
It wasn't there when I went to bed the
night before. It's red and sore!
Since I can't see my rh. Till nov. 11th
, I am going to see my gp.And ask her
about it. I'm trying to avoid the sun as
much as possible, but this is un real!
And I agree with lady brannon, if you
take predizone for any lenth of time, you
will gain weight!!
I was taking a well known herble
suppliment and was only a size 6 at 114
lbs. And after being on predizone I
gained up to a now 181lbs and size16\18.
I've refused to take predizone now for
about 2yrs and my rh told me that because
I took it for about 2 yrs straight 20mg.
I would probably not be able to lose the
weight.
My biggest fear is now that i'm having
so....Mant new problems, they will insist
on me going back on it for my well being.
This is tough! I don't want to gain
more weight! I have tried all forms of
exercise and am not able to keep up.
Sharon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Rashes Posted: 10-22-03 12:48pm
*almost* every sle patient I know gets
rashes. The rashes I get (to date about 7
identified and 1 unidentifies, and seen by
over 10 doctors!) are dumbfounding!
They cover my entire body and disfigure
it. I don't even look human when they get
really bad. One time, my old
rheumatologist got "sympathy" rashes and
told me she had *never* seen anything like
it.
I also know that *most* of my lupus
friends have the rashes from the sun.
Most also react poorly to heat.
Yes, sharon, the weight gain from steroids
is *horrible* to get off. I was
thinking...Maybe we should request a place
(or even on this forum) where people who
have been on long-term fairly high dose
steroids can support each other to help
lose weight. What do you guys think?
I have *finally* gotten off high dose
steroids after two long, frustrating
years. I will have to be in the hospital
to *ever* take it willingly again. I
should explain that by high dose that my
average prednisone intake was about 60 mg.
Going as low as a *daily, eg. Not
tapering* 20 mg dose to a 500mg iv
dose...*sigh*
i have, to date, gained around 93 pounds.
(just typing that makes me nauseaous!)
