discoid lupus

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Larry Greynolds - 16 May 2004 13:11 GMT

i was diagnosed with discoid lupus about 6 yrs ago. other than living
with it and learning as i go i dont know much about it love to hear
from any one with knowledge or helpful hints
mrs cowboy

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BJ - 16 May 2004 15:27 GMT

Hi Mrs Cowboy,
I don't have much to offer in the way of advice. I really just wanted to
welcome you. Weekends can be quiet around here, so don't be surprised if it
take a while for others to answer. Someone should be able to help you.
BJ-Sk. Canada

> i was diagnosed with discoid lupus about 6 yrs ago. other than living
> with it and learning as i go i dont know much about it love to hear
> from any one with knowledge or helpful hints
> mrs cowboy

Reply to this Message

KCat - 17 May 2004 18:02 GMT

not a lot of folks here who seem to deal with discoid. The ASL FAQ does has
some info on discoid lupus

http://www.ghg/net/schwerpt/ASLFAQ/

I assume you are avoiding UV exposure as much as possible.

It's my understanding that while discoid lesions largely appear on
unprotected areas (scalp, forearms) they can still be exacerbated by UV
exposure to other parts of the body. Much like systemic lupus can be. And
of course, there are many sources of such exposure that people don't
realize - older computer monitors (most new ones have a low emission rate
but with long enough in front of one it's probably still somewhat of a
risk), fluorescent lighting in stores or other buildings (my rheumy's office
is solid fluorescent without covers!) but even the covered lights can leak
enough to bother some people. I've watched a friend of mine turn bright red
over a period of an hour in a room with covered fluorescent lights.
amazing. let's see - halogen lamps emit a lot of IR light and this is
probably best avoided as well. I think the best answer is to wear sunblock
if in doubt. But you have probably already determined what your boundaries
are in terms of exposure.

Cremes don't seem to do much for it from what I've heard - but what is your
experience with that?

Welcome to the group - when you get time, peruse our FAQ.
kcat

Reply to this Message

JB - 17 May 2004 20:10 GMT

Dear KCat, and group,

I don't have discoid lupus, but on the issue of UV exposure I am beginning
to observe some things I never saw relationship to before.

One is that sitting in front of this computer does bring on muscular and
body heat in me. Yesterday morning I was sitting here and my feet and hands
were cold (the room being over air conditioned with the fan blowing
constantly). I was getting quite uncomfortable, and ended up going upstairs
eventually to turn the temperature up and the fan off. But I also was
perspiring under my arms at the same time, and my shoulders and arms were
burning, likely felt warmth in my face as well, as is so often the case when
I get to feeling like this. (All of this is common when my chronic fatigue
returns, though I have no idea whether a connection to UV light had any part
in it. My eyes have been sensitive to light for many years. I think turning
red in the face at some of these times is fairly new, in the last year or
two.{ I get hot flashes also (had chemo years ago, then off the hormones
with recent research recommendations), so it is all pretty confusing.} I did
go to look if my face was red, but it was not. Sometimes my face gets red,
even an indoor lamp at my desk can make me so hot I have to stop what I'm
doing and go cool off with a cool drink and just time away from the light.
I've thought this was strange, especially since I'm sitting in a cool
basement area working. The light bulbs are just regular ones, and they are
not right over me, either. Up until recently I've attributed most of the hot
and cold changes to being post menopausal, and that may still be accurate, I
don't know, but not the redness or the muscle complaints and fatigue. Its
too much for me to sort out well.

This computer monitor isn't new. It says on it MPR II Low Emission, does
that mean anything about UV exposure?

I also went to a seminar recently that had indirect and covered lighting,
apparently fluorescent. As the morning and day went on, I got a recurrence
of fatigue with muscle burning and warmth. I was perfectly rested, so lack
of sleep didn't bring it on. At these times, I also can notice a slight
visual glow or glossiness to everything for awhile, and I did that day.

Curious.

Also, how does one get to the FAQ's for this site? That is what you mean,
isn't it? FAQ's for this support group?
Thanks,

JB

> > i was diagnosed with discoid lupus about 6 yrs ago. other than living
> > with it and learning as i go i dont know much about it love to hear
[quoted text clipped - 28 lines]
> Welcome to the group - when you get time, peruse our FAQ.
> kcat

Reply to this Message

KCat - 17 May 2004 21:26 GMT

> Dear KCat, and group,
>
> I don't have discoid lupus, but on the issue of UV exposure I am beginning
> to observe some things I never saw relationship to before.

I think this is pretty common for us - before I had any kind of diagnosis I
would notice that at the end of a day working on the PC my face would burn
and itch and I would feel generally feverish. "Fever" for a lot of us is
anything over 99. some of us start feeling pretty crummy at 98.7 my
"normal" temp is 97.7. this isn't unusual even in healthy folks.

> I get to feeling like this. (All of this is common when my chronic fatigue
> returns, though I have no idea whether a connection to UV light had any part
> in it.

well - it can be hard to determine too because UV exposure problems don't
always manifest the same day. it can take a day or two for some folks to
start feeling really crummy and so they don't make the connection. As time
has gone on, my response has become more immediate though. I sure wouldn't
recommend testing the theory though. But do pay attention to how your body
responds to these sorts of things.

Low emission monitors are only "better" than older ones that were not low
emission and the standard has changed just in the past couple of years. It
depends also on your personal tolerance as well as how much time you sit in
front of the monitor. I recommend for some folks to try a good sunblock if
they know they're going to be at the PC for several hours. or whatever
their personal limit is.

> My eyes have been sensitive to light for many years. I think turning
> red in the face at some of these times is fairly new, in the last year or
> two.

Do you mean that you flush easily when active or overheated? I do this and
did before going on various meds but the meds certainly have made it worse.
Do you take any meds that might be contributing to this problem. before
meds, hubby and I would go on bike rides and even evening bikerides resulted
in my face turning bright red and swelling up and itching. freaked him out
sometimes.

> go to look if my face was red, but it was not. Sometimes my face gets red,
> even an indoor lamp at my desk can make me so hot I have to stop what I'm
> doing and go cool off with a cool drink and just time away from the light.

yes - the fact that incandescents don't emit much UV is only helpful on some
levels - we can respond to IR light as well and Incandescents and halogen
lamps put out a lot of this.

> don't know, but not the redness or the muscle complaints and fatigue. Its
> too much for me to sort out well.

yeah - it's a lot to figure out and I can't even swear that I've got it all
figured out. The stores that make me sickest not only have the exposed
lights but usually have candles, colognes and cleaner smells. that can't be
helping even though I wouldn't put myself in the category of Multiple
Chemical Sensitive.

> of sleep didn't bring it on. At these times, I also can notice a slight
> visual glow or glossiness to everything for awhile, and I did that day.

hmm.. have you seen your eye doc regularly? I don't know what this could be
other than fatigue of your eyes or perhaps dryness. But with these diseases
it is so hard to know.

> Also, how does one get to the FAQ's for this site? That is what you mean,
> isn't it? FAQ's for this support group?

you should be able to get to it at the following link

http://www.ghg.net/schwerpt/ASLFAQ/

or

http://www.northeastlupus.org.uk/katfaq

just for grins, check out my personal pages as well.

http://www.ghg.net/schwerpt/kcspages/

hope that helps. And welcome!

kcat

> Thanks,
>
[quoted text clipped - 39 lines]
> > Welcome to the group - when you get time, peruse our FAQ.
> > kcat

Reply to this Message

JB - 18 May 2004 02:54 GMT

Dear KCat, and group,

Thanks for your responses.

I will try some sunscreen to see if it helps at the monitor and with the
lights.

I guess I do flush easily, it isn't a rash, its just from the general
reaction I'm having, which develops heat on my skin, and in my muscles,
along with burning. I don't know if my temperature increases or not.

Real exertion used to be the cause of it, but now a simple light bulb across
the table can do it too.

I'm not on any medication except assorted vitamins, glucosamine and
chondroitin, MSM, baby aspirin , Zyrtec, and ibuprofen at times.

The thing with my eyes has been happening off and on in the stronger
relapses of chronic fatigue that I've had over 16 years, and lately I've
been getting it again, occasionally. I do have dry eyes, but never so far
have I had anything else wrong with my eyes, so I don't suspect anything
now, but it is an odd addition to everything else, and one I can't say I've
ever heard anyone else comment about.

Thanks again, KCat,

JB

> > Dear KCat, and group,
> >
[quoted text clipped - 124 lines]
> > > Welcome to the group - when you get time, peruse our FAQ.
> > > kcat

Reply to this Message

KCat - 18 May 2004 16:31 GMT

I want to point out that I do not mean to indicate that IR light triggers
flares or similar responses. IR is simply said "heat" and for some of us
it's easy to get overheated. For me, heat from a heating pad or a bright
incandescent lightbulb can make me feel pretty crummy - but only as long as
their is exposure. Turn the light off or remove the heat source and I'm
fine.

When I was a kid and we first learned that I had scoliosis I also learned
that the reason heating pads made the back pain worse was because I was
getting fever in my spine. Fever that couldn't be detected much on my
forehead or using an oral thermometer but that would show up as 102 or
greater on my spine.

The redness and flushing from IR is just a matter of reacting to that heat
as far as I can tell and does not cause a rash or lingering joint/muscle
pain like UV does.

side note - for many years my mom complained about my reading in low light -
now I wonder if I just was showing a preference in my childhood because of a
discomfort that I didn't snap to at the time. We recently fixed up our
"library" and I finally put a 3-way bulb in my reading lamp - Now I can read
at 35 watts again instead of 60 which was too harsh.

Reply to this Message

Andy - 18 May 2004 07:39 GMT

In article <10ai3itj1eas02e@corp.supernews.com>, JB <apreis@pokynet.com>
wrote
[

>Also, how does one get to the FAQ's for this site? That is what you mean,
>isn't it? FAQ's for this support group?

Click on this if you are on-line- http://www.ghg/net/schwerpt/ASLFAQ/

Or, copy'n'paste this into your browser- www.ghg/net/schwerpt/ASLFAQ/

There is also a clone at this address, although I'm not certain it's
up-to-date

http://www.northeastlupus.org.uk/katfaq/index.htm

Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Reply to this Message

KCat - 18 May 2004 16:25 GMT

> [
> >Also, how does one get to the FAQ's for this site? That is what you mean,
> >isn't it? FAQ's for this support group?
>
> Click on this if you are on-line- http://www.ghg/net/schwerpt/ASLFAQ/

brother dear is getting senile - that should be
http://www.ghg.net/schwerpt/ASLFAQ/

> Or, copy'n'paste this into your browser- www.ghg/net/schwerpt/ASLFAQ/

likewise www.ghg.net/schwerpt/ASLFAQ/

I'm sure he got this one right though - hmm... maybe he's just trying to
look better than l'il sis*

> http://www.northeastlupus.org.uk/katfaq/index.htm

KCat

*"virtual" siblings.

Reply to this Message

Andy - 18 May 2004 18:32 GMT

>> [
>> >Also, how does one get to the FAQ's for this site? That is what you mean,
[quoted text clipped - 4 lines]
>brother dear is getting senile - that should be
>http://www.ghg.net/schwerpt/ASLFAQ/

(1)

Interesting. Brotherdear copied it from JB's post of 17 May which quoted
yours as follows as seen on my PC:

> http://www.ghg/net/schwerpt/ASLFAQ/

(2)

However your original post of 17 May also said

>http://www.ghg/net/schwerpt/ASLFAQ/

(3)
on my PC.

For clarity: as I see it before I post it, the line above (1) has ghg
dot net but those above (2) and (3) have ghg slash net.

This may be a Newsreader glitch here. Or as KWMBO says I may be past my
sell-by date :)

Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Reply to this Message

KCat - 19 May 2004 00:56 GMT

> This may be a Newsreader glitch here. Or as KWMBO says I may be past my
> sell-by date :)

Sadly - it seems that KWMBO is, not surprisingly, the originator of the
typo.

oh well... I'll blame the fever of 99.6 I've had all day. convenient, eh?

Brotherdear is on top of it as always. :P

Reply to this Message

JB - 18 May 2004 18:35 GMT

Dear KCat, Andy and group,

Thanks for the responses.

I know what you mean about the warmth and facial flushing, and being
sensitive to it, I imagine my whole upper body is warmed by the light to
some extent . I am especially sensitive to the heat in front of the lamp,
and also prefer more dim lighting, and have as far back as I remember too.

Once, some years ago, when I was sitting on a jury, we faced large windows
across a big room. The sunlight was very bothersome to me, I couldn't pay
attention to the courtroom, and had to ask for the blinds to be pulled. I
had the sense I was the only one so bothered.

I don't think the computer monitor and fluorescent lighting is the same. I'm
just exploring here, seeking to understand. Perhaps I'm looking too closely.

JB

> > [
> > >Also, how does one get to the FAQ's for this site? That is what you mean,
[quoted text clipped - 17 lines]
>
> *"virtual" siblings.

Reply to this Message

KCat - 19 May 2004 01:03 GMT

JB Wrote:

> Once, some years ago, when I was sitting on a jury, we faced large windows
> across a big room. The sunlight was very bothersome to me, I couldn't pay
> attention to the courtroom, and had to ask for the blinds to be pulled. I
> had the sense I was the only one so bothered.

well - I have a lot of trouble with this but for me it's that looking into
such light triggers some nasty migraines. In restaurants I make hubby face
windows or other light sources - otherwise trying to focus on him with a
background lighting acts like a strobe and this triggers the pain.

> I don't think the computer monitor and fluorescent lighting is the same. I'm
> just exploring here, seeking to understand. Perhaps I'm looking too closely.

sorry - little foggy today - what do you mean by "the same" - the same
response on your part or the same kind of lighting? Both emit UV light but
I'm sure the wavelengths vary.

The lupus community is starting to understand that UVA is a major
contributor to lupus reactions when it comes to photosensitivity. UVB has
classically been considered the bad guy because it causes the more obvious
symptom - sunburn. But UVA is now thought to be the main cause of DNA
changes that exacerbate lupus symptoms. Both are a problem and current
guidelines strongly suggest using a sunblock like Total Block which blocks
all three wavelengths of UV.

kcat

Reply to this Message

JB - 19 May 2004 03:31 GMT

Dear KCat,

I don't think that what happens to me in front of the computer monitor and
under fluorescent lighting is the same as the warmth and flushing from the
light across the table. I recognize now there has to be some heat involved
coming from the lamp, regardless what kind of light is emanated, and even
though the lamp is across the table, it is still warming and causing the
flushing, to be sure, though I may also be a little sensitive to it.

Under indirect fluorescent lighting when I was out recently I found that I
got fatigue, warm and burning muscles (esp. in my arms), a feeling of tremor
in those muscles, and also facial redness, and visual glossiness.

Thanks,
JB

> JB Wrote:
>
[quoted text clipped - 26 lines]
>
> kcat

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V - 25 May 2004 04:08 GMT

> > i was diagnosed with discoid lupus about 6 yrs ago. other than living
> > with it and learning as i go i dont know much about it love to hear
> > from any one with knowledge or helpful hints
> > mrs cowboy

My father has discoid lupus. He has joint swelling and "the rash" and also
very reddish skin , as I do, but I have SLE. Any questions, just email me.
vbiggs3255 at frontiernet.net
V

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Pukeko Palace - 19 May 2004 05:58 GMT

>i was diagnosed with discoid lupus about 6 yrs ago. other than living
>with it and learning as i go i dont know much about it love to hear
>from any one with knowledge or helpful hints
>mrs cowboy

I've had Lupus for17 years now(I'm 46) mostly with skin rashes and
joint pains, fatigue etc. I have been on Plaquenil most of that time.
I take 400mg a day. Doing pretty good despite all the other diseases i
got after. At the end of summer and I don't go out much I accidentally
found a large disc shaped lupus lesion on my shoulder blade. No big
deal but it's my first and it was very strange looking , disappeared
after applying steroid cream for a week.Once they start do they
usually keep popping up? Most of my skin rashes are more hive/excema
related and I found it strange it popped up in a site unexposed to
sunlight!
Sue in NewZ

Reply to this Message

BJ - 19 May 2004 16:13 GMT

Hi Sue,
Glad to see you here. It seems like a long time since you last posted. Don't
be a stranger.
BJ-Sk. Canada

> >i was diagnosed with discoid lupus about 6 yrs ago. other than living
> >with it and learning as i go i dont know much about it love to hear
[quoted text clipped - 11 lines]
> sunlight!
> Sue in NewZ

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