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Posted 11/12/2009 3:38 AM (GMT 0)
hi everyone, i'm a regular lurker on this forum, hope you will be able to help me with some questions. also i would like to appologise in advadce for my miserable grammer and

spelling - english is not my language...

i suffer from extreme photosensitivity (along with many many many other symptoms) due to autoimmune diseases, actually it's a complete intolerance to uv (including flourecsent lights). due to that condition i can't go out during day time and can not be in public places with flourescent lights (all public places in my country...).i can not even stand next to a window, my blinds at home are shut all day long. it's been going on for 3 years now and as u can imagine it has some effect on my quality of life...

i was wondering is there anyone else with similiar condition and has anyone found anything but protection/avoidance ect. helpfull, even a bit. i am especially curious about drugs and especially plaquenill - i still haven't managed to understand if it reduces or increases uv sensitivity.

hope you are all well (considering...) and thank u for the enlightning forum :-)

nofit

Posted 11/12/2009 4:47 AM (GMT 0)
I am definatly sensitive to the sun, not so much florescent lights that I've noticed...starts flares for me, and also skin rashes...how I cope is always wearing long sleeves, hats, pants, and where my skin is exposed I put on sunscreen with 65spf or higher (dermatologist recommended). In the spring and summer I avoid going out for longer than 5 min in the sun (on my way into a store and such), unless it's early in the morn, or late in the eve...I LOVE going outside, and definatly in the sun, but that changed for me too...still adjusting to the new lifestyle myself. I'm on Plaquenil and what my dermatologist advised me was not to purposely hang outside in the hottest times of the day (between 10am-4pm), and always cover up with long sleeves, hats, etc...also to wear the sunscreen. I don't think that it really helps with the sun-sensitivity, just helps to control the flares, and disease progression...the sunscreen should prevent skin rashes from lupus photosensitivity to my knowledge...has worked for me thus far..(almost 2 yrs). I'm still new to having lupus, but I hope that my somewhat limited experience helps. I've read that as having lupus I'm allergic to the UVA and UVB rays, not the UVC. The sunscreen's supposed to protect from both. Anyways, I hope that you can find as many tips to help you live and enjoy your life to the fullest, despite the photo-sunsensitivity...I know that every new tool in my pocket so to speak really helps me just that much more. I go for walks in the shady parks during the day with my hat, and skin covering clothes on..I'm going to be investing in some funky stylish hats in the future for the next spring...little bit at a time. This season it's warm socks and booties to protect my newly cold-sensitive feet. Take care and hope this helps some.

-Ellie
Posted 11/12/2009 12:20 PM (GMT 0)
Hi nofit

I am sorry for your photosensitivity which must make life very difficult

Plaquenil is generally agreed to reduce photosensitivity a little, so that it is an extra help, but not so much that other precautions can be relaxed. In a very few people it can cause a photosensitive reaction, by a different sort of mechanism, which cancels out the protective element. The reduction in photosensitivity is not the main reason for taking Plaquenil and it is used for treating autoimmune connective tissue diseases and not as far as I know to treat any of the many other sorts of autoimmune diseases.

There is a plant which can help reduce photosensitivity too according to the excellent New Zealand DermNet site but I haven't heard of it being taken in North America or Europe. Of course many of the medicines we take for lupus increase photosensitivity including NSAIDs and the immunosuppressants not to mention hormonal intake and a number of plant medicines such as St John's Wort. There are also many plants foods that might increase it although information about this is rather vague. It is said that one reason why the nightshade plants such as tomatoes and peppers should be avoided is that they increase photosensitivity. Mention has also been made of mangoes, celery and fennel increasing photosensitivity but I think that is mainly contact

http://dermnetnz.org/reactions/photosensitivity.html

Sorry this is not much help to you. Maybe you will find something if you google (photosensitive diseases) or (photosensitivity) There is a congenital condition but I forget the name. I reckon if there was any way of seriously reducing photosensitivity apart from avoidance, these people would have found it

BB

Post Edited (BumbleBee1) : 11/12/2009 5:28:26 AM (GMT-7)

Posted 11/12/2009 4:12 PM (GMT 0)
nofit,

Have you been seen by a rheumatologist? Most of us with lupus have photosensitivity, but in different degrees. Your case sounds very extreme and I hope you can make an appointment with a doctor to get some help.

As far as products go, there are many. Check this out:

stanford.wellsphere.com/lupus-article/photosensitivity-day/757324. It's an article for people just like you and gives you many tips on where to buy clothes that will help protect you from the sun's rays.

I also have an umbrella that protects from UV rays and use it to walk from my car to the store, when I go to the park, etc. The website that sells them also advertises many other products to protect you from UV rays:

www.coolibar.com/shade.html

I hope you can find some relief. Living inside in the dark is no way to live.

By the way, your grammar is excellent.

Pat
Posted 11/12/2009 5:29 PM (GMT 0)
Tomatoes and peppers increase photosensitivity??? I've never heard of that before. I eat TONS of tomatoes on a regular basis, and quite regularily bell peppers. If I'd know that they were supposedly making things worse for me. Can anyone confirm this about the tomatoes?
Posted 11/12/2009 5:40 PM (GMT 0)
I've never heard of these foods being related to the sun sensitivity.

However, it is recommended that lupies avoid eating "nightshade" plants - tomatoes, eggplant, potatoes,.. to help keep inflammation down.
Posted 11/29/2009 6:17 PM (GMT 0)
 I have big problems with photosensitivity to the point that until i was advised to take mepacrine i could not bare to part the curtains because of the brightness,i wore sunglasses in the house and at one time could'nt bare to go out in daylight! I was'nt always this way it fluctuates! I cant bare flourecent lights or the low energy bulbs which make me feel terribly sick if i'm exposed to for not very long at all! I have had to go outside when i've been in resterants because the lighting has made me feel ill...i get really hot,start sweatting and feel dizzy and sick and then it can be followed by a flare! I lost my job because of this problem,flourecent lights just trigger me off into a flare which can last months! I'M under a consultant at St Thomas's in London who put me on mepacrine and though it has'nt solved it completely it has helped give me some improved quality of life and keeps me clear from any skin rashes apart from the soles of my feet! Mepacrine is'nt a lisenced drug here but has been used for some people with possitive results! I had to give up my two hour class at college which is only once a week but the flourecent lights made it impossible for me though i had managed the previous year...however i tend to learn what i can from the tutor and do some painting and drawing at home in daylight which i can manage with since mepacrine! I can even tolorate been in the sun more than i had with high factor but i cover up and keep out of the sun when it's hottest and use the shade when possible! I once went for my hair cut and the sun shone through the window and i felt ill and had to take a break,glass of water and move...bit embarrassing cos i'm not sure some people believe you. It's very restricting but i've come to know what and how much i can tolorate now!
Might be worth enquiring about mepacrine i take 100mg 4days out of a week along with 400mg plaquinil a day!
Hope things improve x
Posted 12/21/2009 10:48 PM (GMT 0)
I have never been officially diagnosed with Lupus. But I have severe sun sensitivity. Extreme UV makes me sick as a dog....often only a minute of summer sun can trigger a 48 hour reaction of extreme fatigue, migraine, light headiness ..... but yet, in Dec. / Jan. here in the South West, I can be out in the sun nearly every day with no consequences. We score 11 - 12 on the UV scale in the summer months, and 0-1 in Dec. / Jan. So I guess those are my threshold UV numbers. In the middle of the summer, I am as vulnerable as previous posters. I can not even let sunlight into the house unless its UV filtered, and even then, sometimes the visible spectrum intensity is too great. Its a tough life indeed.... the life of a bat.

After 15 years of this, I have come to the conclusion there is no remedy more appropriate than the avoidance strategy. Most meds make me very ill..... for example, I took Nortrptyline for migraine prevention, and it worked very well, however, the level of sun sensitivity became so intense, I suffered from every other component of the reaction, but a full blown migraine was avoided. So I still could not function, even though I avoided the agonizing migraine. So I was forced indoors till the sun set ... I also experienced extreme lethargy from the drug, even when not exposed to the sun.

Sometimes I wonder if dual residency is the only sensible avoidance strategy. Alaska in the summers might be a safe haven. Central Alaska has the same UV numbers in summer that we experience in the winters in the South West. Seems like a sensible strategy, but I have not tested the theory yet. Not cheap, not easy to do, but life is short, so these thoughts cross my mind. I would be interested in hearing from others with similar situation.
Posted 12/22/2009 7:41 AM (GMT 0)
No fit, have the same problem, I was actually having to take nausea meds because I was getting so sick from light through windows. What meds you take, besides plaq, can make a big difference. Soma for example, made me get such extreme sensitivity that I was heading for porphyria dx. Switched to another med and it went away. For me and a lot f people on porphyria lists it is a problem metabolizing CYP3A4 type drugs. If you google "drugs bad for porphyria" you might find a good list. The porphyria association has some lists I think. Foods too. It was very eye opening what other drugs cause it. Once I switched to drugs not on the list (except for my lupus drugs--plaquenil) things got much better. After all, there are plenty of other muscle relaxers I can take so no reason to take Soma if it is making things so bad. I have alot of fluorescents from fish lights, but I use the lower light more actinic bluer bulbs. It seems to help, but they are more expensive. Sunlight and incandescent bother me.
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