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Jenn

Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003
Posts: 78
Location: Canada
Light Sensitivity.......
Posted: 10-07-03 07:49am

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 Cool
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sharon

Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
Glasses
Posted: 10-07-03 08:30am

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! Sad Sad that really bugs me!!
.........Sharon Smile
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Jenn

Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003
Posts: 78
Location: Canada
Sharon
Posted: 10-07-03 11:20am

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 Cool
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sharon

Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
Plaquenil?
Posted: 10-07-03 12:06pm

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 Smile
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Jenn

Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003
Posts: 78
Location: Canada
Plaquenil
Posted: 10-08-03 06:57am

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 Cool
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sharon

Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
Rashes
Posted: 10-08-03 07:35am

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 Rolling Eyes 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 Smile
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LadyBrannon

Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX

Posted: 10-08-03 13:37pm

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
Flourescent Lighting
Posted: 10-10-03 17:07pm

Hello all, I have another Question 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. Rolling Eyes Rolling Eyes
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. Rolling Eyes Sad this makes it really hard to get
anything done in a reasonabe time.
Sharon Smile
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LadyBrannon

Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX

Posted: 10-10-03 17:34pm

Yes!!!!!! Smile

yes, they can bother you...Fluorescent or halogen...Depending on how sensistive you are!

Hugs,
ladybrannon

ps- be glad the hubby is an electrician! Smile
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sharon

Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
Oh No........
Posted: 10-10-03 17:47pm

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 Smile
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LadyBrannon

Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX

Posted: 10-12-03 09:44am

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 Cool
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sharon

Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
Lady Brannon
Posted: 10-12-03 11:14am

Yes, I would like that info. Please, and thankyou for your continuous concern and help!! Smile
my hubby was very understanding about the lighting, as he always is when it comes to my health. Smile 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! Sad
is there any season,weather wise that doesn't bother us?? Sad
i'm hurting in so many places today, I couldn't count them if I tried!! Rolling Eyes it's just one of them days!!
Thanks again......Sharon Smile
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szeeba

New User, Becoming EHEALTHy
Joined: 13 Oct 2003
Posts: 8
Location: Philadelphia

Posted: 10-13-03 09:00am

~szeeba~


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

Posted: 10-13-03 10:23am

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

Posted: 10-13-03 11:21am

~szeeba~


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

Posted: 10-13-03 13:36pm

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
Plaquenill
Posted: 10-13-03 16:16pm

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
Corrections to Last Post @ Plaquenik
Posted: 10-13-03 16:18pm

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

Posted: 10-13-03 17:04pm

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
to All, Thankyou
Posted: 10-13-03 20:05pm

Thanks all, I feel like i've had a real* eye opener * ( a little humor there), on the subject!! Surprised
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 Smile Smile
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