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Jenn
Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003
Posts: 78
Location: Canada
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Light Sensitivity.......
Posted: 10-07-03 07:49am
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Hi everyone,
my gp sent me to an optomitrist. I have
always had great eye sight but because of
my light sensitivity I get headaches all
the time. I try to wear my sun glasses
but it's not appropriate at work or at
night.
The optomitrist is giving me a pair of
glasses for work which will have pinkish
tint to them which helps cut the glare. I
am hoping this is going to work. He is
also giving me a pair for driving at night
with a special coating to help the light
filter through. I am really excited about
this. It will mean a lot less headaches.
I'll have more info in a couple of days
but I wanted to let everyone know there
may a new solution to old problems. A lot
of us wear sunglasses everywhere we go.
I'll get my work glasses tomorrow and my
driving glasses in 2 weeks. I'll let
everyone know how they work. I'm keeping
my fingers crossed.
Cheers,
jenn 
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
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Glasses
Posted: 10-07-03 08:30am
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Hi jenn, I also have problems with my
eyes being so....Sensitive to light!
I went to get new glasses over a year
ago,and he had trouble even looking in my
eyes with a light. I felt like a big baby
but I couldn't handle it! He was very
understanding. He thinks I have something
that can be corrected with surgery. I now
know that it has to do with my lupus.
He didn't give me new glasses because he
said it wouldn't help.
I dicovered that I can where my sun
glasses at night and the on coming
headlights and street lights don't bother
me as bad. I always just thought I was
night blind. I learn somthing new every
day on this web site!
My eyes are getting really bad, but i'm
not sure what I can do about it. It's
starting to affect my quilting!  that really bugs
me!!
.........Sharon 
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Jenn
Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003
Posts: 78
Location: Canada
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Sharon
Posted: 10-07-03 11:20am
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Hi sharon,
i'll let you know how these glasses affect
me. My doctor thinks they should help.
The ones I have for driving are clear but
they have a special coating that allows
light pass straight through. He explained
this to me and it sounds promising. We'll
see.
Are you taking plaquenil? How much?
Cheers,
jenn
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
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Plaquenil?
Posted: 10-07-03 12:06pm
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No, i'm not taking plaquenil. I'm not
sure if i've taken it before or not.
There has been so....Many different meds
that i've taken ,that I can't even
remember what it is for? Sharon
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Jenn
Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003
Posts: 78
Location: Canada
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Plaquenil
Posted: 10-08-03 06:57am
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Hi sharon,
i take plaquenil every day. It is the one
med that I will not give up. It controls
my skin rashes, I don't even have to use
my creams anymore. It also helps control
the flares. They have no idea why it
works because it's an antimalarial drug
but it does. The reason I asked if you
were taking it is because if you are
prescribed more than the recommended
doseage it can have a bad affect on your
eye sight. A recent study shows that it
has not affected anyones eyes in the past
3 years, if they were on the recommended
doseage. Different things work for
different people.
Cheers,
jenn
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
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Rashes
Posted: 10-08-03 07:35am
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Hi all, I don't get the rash as I heard
some of you describe them. I do get an
area with a lot of small bumps. They
don't always itch, sometimes but not
always. I do get a blob of brownish
looking spots on my face and neck. Sorta
looks like a birth mark gone wild 
when I first went to a rheu. Doctor, he
said it was the butterfly rash. It also
shows up on my arms at times. I have
noticed it appears darker when i've over
done it.
Anyone else have this?...........Sharon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 10-08-03 13:37pm
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The butterfly rash (malar rash) is very
common in lupus. It can range from light
to almost disfuguring.
I know I have it, and it can actually get
worse depending on the day...Just like the
rest of my symptoms.
Hugs,
ladybrannon
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
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Flourescent Lighting
Posted: 10-10-03 17:07pm
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Hello all, I have another 
about lights. I know the lights in the
stores bother me and now I know what to do
about that. But can the lights in my home
be bothering me the same way? I changed
the bulb in my lamp I use when quilting
from flourescent to reg. It was an
uncovered bulb. What about the covered
flourescent lighting through out my
home?
Most homes have flourescent lighting in
the kitchen. And since i'm married to a
retired electrition, we have them
everywhere.
i'm wondering if that's adding to my
constant tiredness whenever I try to cook
or clean or do anything. I can't be up
doing things around the house without
having to take many,many breaks. About
every five minutes or so, I have to sit
down.
this makes it
really hard to get
anything done in a reasonabe time.
Sharon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 10-10-03 17:34pm
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Yes!!!!!!
yes, they can bother you...Fluorescent or
halogen...Depending on how sensistive you
are!
Hugs,
ladybrannon
ps- be glad the hubby is an electrician!
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
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Oh No........
Posted: 10-10-03 17:47pm
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Thanks , lady brannon, i'm not so sure my
hubby will be all that happy with the
news!! He'll change them for me, but he's
always been big on flourescent lighting.
I've always hated it!!
Now I know why. I'll let you know how
he takes the news.
Sharon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 10-12-03 09:44am
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Sharon,
i found a company that covers fluorescent
lights *safely* if you are interested. I
will say up front that I have not used
them, I do not know anyone who has...They
contacted my group here in nc.
Let me know...Or if anyone else would like
the information...
Hugs,
ladybrannon
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
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Lady Brannon
Posted: 10-12-03 11:14am
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Yes, I would like that info. Please, and
thankyou for your continuous concern and
help!!
my hubby was very understanding about
the lighting, as he always is when it
comes to my health. lord knows what i'd
do without him!!
I'm glad the hot weather is on it's way
out, but all this damp weather is making
me hurt all over!
is there any season,weather wise that
doesn't bother us??
i'm hurting in so many places today, I
couldn't count them if I tried!!
it's just one of them days!!
Thanks again......Sharon
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szeeba
New User, Becoming EHEALTHy
Joined: 13 Oct 2003
Posts: 8
Location: Philadelphia
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Posted: 10-13-03 09:00am
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Last edited by szeeba on 10-28-03 10:54am; edited 1 time in total
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 10-13-03 10:23am
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Addressing the plaquenil comment:
actually, it normally takes 6-8 weeks to
take effect; however, it is *not*
considered ineffective until the six month
period arrives.
Hugs,
ladybrannon
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szeeba
New User, Becoming EHEALTHy
Joined: 13 Oct 2003
Posts: 8
Location: Philadelphia
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Posted: 10-13-03 11:21am
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Last edited by szeeba on 10-28-03 10:55am; edited 1 time in total
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 10-13-03 13:36pm
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I believe that is what I said... It
*normally* takes 6-8 weeks to become
effective. Thus, you felt better after 2
months. However, the drug is not
considered *ineffective* until after the
sixth month. At that time, the drug is
considered ineffective for that person.
Therefore, while most people are feeling
better after 2 or so months, some people
may not feel better until the sixth
month...Although that is not the norm.
Thus, why they prescribe it for 6
months...*then* decide if it is
ineffective.
I think we are saying the same
thing...Just differently.
Ladybrannon
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tbds2000
New User, Becoming EHEALTHy
Joined: 12 Oct 2003
Posts: 10
Location: Grayslake, IL
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Plaquenill
Posted: 10-13-03 16:16pm
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Hi....I've been on it for about 30
months...And am currently beginning to
drop the dosage(dr.S direction). Your
eyes can have troublr with long term
use....It is important to get them checked
at least every 6 months with a visual
filed test....My regular eye
doctor/glasses guy performs it for
me.....Easy test...Like a giant asteroid
game. I also use "huge
granny-got-cateract sunglasses " that go
over my regular glasses and wrap around
the sides...They look dumb but really
work....And they are only about $10 at
walgreens. When I get funny looks or
comments, I just tell them the " all the
cool kids are wearing them....They should
get a pair! And be cool too!" that
usually helps everyone laugh and move
on.........I have caught my husband
wearing them in the car from time to time
too.
Take care all....
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tbds2000
New User, Becoming EHEALTHy
Joined: 12 Oct 2003
Posts: 10
Location: Grayslake, IL
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Corrections to Last Post @ Plaquenik
Posted: 10-13-03 16:18pm
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Sorry, should have spell-checked.....It is
a visual field test......
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 10-13-03 17:04pm
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Hi tbds2000! Welcome to the forum!
Yes, some people do have problems with
their eyes...That is why most doctors
suggest an eye exam every six
months...Keepiing in mind that you need to
tell the eye doctor that you are on
plaquenil so that they do the visual field
test.
Again, welcome!
Hugs,
ladybrannon
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
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to All, Thankyou
Posted: 10-13-03 20:05pm
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Thanks all, I feel like i've had a real*
eye opener * ( a little humor there), on
the subject!! 
seriously, I never thought all my eye
problems had anything to do with lupus!
Why? I have no clue! Everything else
does.
I have a lot to talk to my rheumy and my
eye docyor about!
Maybe now I will get the proper
treatment. I am a little concerned about
taking plaquenal( sorry I forgot how to
spell it).
If it takes so long to work, what is the
positive side to taking it?
What are the side
affects?.............Sharon
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