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New Member

Date Joined Apr 2008
Total Posts : 2
   Posted 4/4/2008 5:38 AM (GMT -6)   
hello everyone, my name is nofit, i'm 35 and in the process of getting diagnosed with lupus and/or other autoimmune disease for a year and ahalf now (please excuse my spelling and other mistakes, english is not my language...). my symptoms are extremly unique and bizzare (to be continued...) but my 2 main problems are severe photosensitivity and allergies to e-v-e-r-y-t-h-i-n-g. severe photosensitivity means i have zero tolerance to any kind of uv including fluorecsent lights. i am basicly a prisoner in my home, living in the dark with closed blinds except at dark hours. during the past year and a half some doctors recomended i try plaquenil while others say it will even increase my photosensitivity (as if it's possible...). does anyone else here have severe photosensitivity? did you find anything except avoidance helpfull? plaquenill - better with or without? any kind of information would be helpfull. thanks, nofit

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 4/4/2008 9:09 AM (GMT -6)   
Nofit, I don't have that problem but hope someone here will be able to help you. I can't imagine what you must be going through. I wish you the best and hope you get some relief.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 4/4/2008 9:52 AM (GMT -6)   
Hi Nofit, my doctor has told me Plaquenil helps with photosensitivity but I don't know how much is helps. Here is some information on plaq:

According to The Lupus Book by Daniel Wallace, anti-malarials do several things.

They block UV light from damaging skin, have an anti-inflammatory effect like NSAIDS for joint pain, lower cholesterol levels, inhibit clotting, block cytokines which promote inflammation, and MOST importantly alter the acid-base balance of the cells. This limits the cells ability to process antigens and in that process limits the production of unnecessary anti-bodies. The reduction of unnecessary anti-bodies will slow down the progression of lupus.

Plaquenil does not lower blood counts or make you more susceptible to infection. It is mild by nature and has the fewest side-effects of all the meds prescribed for the treatment of lupus.

I sure hope it helps you, I couldn't imagine what you go through each day. ((((hugs)))) Take care and let us know if Plaq helps you.

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 4/4/2008 9:57 AM (GMT -6)   
Hello, Nofit,
I am so sorry to hear that you are going thru this. I do not have the photosensitivity nearly as severe as you but I can definitely relate to the "allergic to EVERYTHING". Extremely frustrating!
My photosensitivity is slowly worsening, there is one store that I avoid altogether, and many others that I have to hurry thru. My DH was changing out all the lightbulbs in our house to the energy saving ones and we both noticed that I started to get worse. We went back to regular lightbulbs!
I hope that you are able to find some relief soon. The plaq did help me, but when I added Imuran, I had a severe allergic reaction. So, keep an eye on yourself as you try new things, and call your doctor right away if something "strange" starts happening.
Sending (((hugs))) - hope you feel better!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.

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