[kecca]

Hi,

I was hoping that someone here could give an opinion about my experience. I have been in the process of being diagnosed with lupus for several months. My Rheumy and dermatologist both suspected lupus. I have 6 of the diagnostic criteria, positive ANA, but rest of the labs were negative. The primary symptoms are photosensitivity, joint pain, malar rash and reynaud's. I am sensitive to reflective light as well (through glass and from fluorescent light, and it makes my facial rash worse and makes me not feel well). The docs now say it can't be lupus, because I shouldn't be sensitive to anything but direct sunlight. Does anyone have any experience with this?

Thanks so much for your help. This process has been so frustrating.

 

[Joandublin]

Hi Kecca

Welcome to the Forum. Im sorry things are so frustrating for you and I dont blame you feeling fed up. Im afraid your doctors are talking a lot of codswhallop by saying patients with Lupus dont react to fluorescent lighting

But dont take my word for it. Go and print out this link and hand it to them

http://www3.interscience.wiley.com/journal/112206539/abstract?CRETRY=1&SRETRY=0

Its worrying that they have such a limited understanding of photosensitivity in Lupus patients:worried: I am very photosensitive but I can stand more exposure to direct sunlight than I can to fluorescent or halogen lighting. Actually through trial and error I believe the worst for me is Halogen lighting. About 5/10 minutes is all I need to set off a range of symptoms including a bright red face, buckets of sweat rolling down from the top of my head, feeling sick and dizzy, etc.

Here is another link to an article in the Daily Mail in the UK dated 14th March 2009 which they might also like to have a copy of...

http://www.dailymail.co.uk/news/art...hes-swelling-sensitive-skin-warn-experts.html

Best of luck and I hope your doctors have the good sense to educate themselves about this.

Take care
Joan:rose:

 

[Clare.T]

Welcome to the forum Kecca

I am sorry that you are being given the run around since it does sound as if you could have a connective tissue disease especially if the ANA is high. Titres of up to 1:160 are not very significant because they can occur in a wide variety of other illnesses. A skin biopsy could help show that you do have lupus The " lupus band" test can show lupus in unaffected exposed skin such as innner forearm or even unexposed unaffected skin like the buttock or stomach. If the biopsy shows lupus then you definitely do have lupus

Hi,

.... The docs now say it can't be lupus, because I shouldn't be sensitive to anything but direct sunlight. Does anyone have any experience with this?

.....

This is not correct, according to all the most up to date 100% reliable lupus expert sources.

It is now known that people with lupus can be sensitive to UVA as well as UVB. UVA comes through the atmosphere at the same strength regardless of season or cloud cover and also comes through windows. It is very well known that some people react even to unprotected fluorescent and halogen lights

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=94&z=17&page=4

I would definitely be looking for a second opinion and probably changing doctors. If these ones are so ignorant in this respect, heaven knows what other mistaken notions they have. All this time, while they dither around you are not being treated !

Check out the various articles about diagnosis and tests to make quite sure all the appropriate lupus tests have been done including urine.

Consider wearing a broad spectrum sun screen every day -there are threads about suitable ones here. Also various ways of protecting oneself against UV with avoidance being the first principle

Please let us know how you get on and best of luck



Clare

 

[kecca]

Thank you both so much for your responses. I have printed out the related articles, and I will bring them with me to my appointment on Monday. More than anything you have validated that I'm not crazy!!!

Joan, you describe EXACTLY how I feel under fluorescent light. That is so reassuring! My doctor would say that you and I were both misdiagnosed...seems unlikely to me.

Thank so much for the support. I feel so empowered.

 

[Joandublin]

You're welcome Kecca. Dont let them fob you off. Clearly they are wrong and their lack of knowledge is worrying. They would have a hard job undiagnosing me. I have anti dsdna antibodies and anti ro antibodies as well

Did you get a full ENA screening? This would look for more specific antibodies. Just curious. I would doubt everything this pair did at this stage!

Best of luck and let us know how you get on

Take care
Joan:rose:

 

[lazylegs]

Hi Kecca,

Welcome to the site.

I hope your doctor takes notice of the information both Joan and Clare have given you. You are not imagining it, many of us react to both fluorescent and reflective light.

I wish you luck in your quest. It can be very frustrating. Feel free to ask questions, we are here to help if we can.

Take care,
Lazylegs

 

[pollianna]

Can't add much more than what's been said but want to wish you luck with the appointment. i would also like to ad that as you are doing at this stage it is vital that YOU do your homework and are on the ball when you see the rheumy. xxxP

 

[LolaLola]

Hello Kecca,
Just wanted to welcome you and re-iterate what Clare says about avoiding the sun. It can make a huge difference to how you feel.

Joan, I hadn't realised you suffered so badly with this. It sucks doesn't it?
x Lola

 

[onetay]

kecca,
Hi and welcome to the site, light affects everyone very differently and for some this type of light can cause them problems. I do hope that you will join us in the chat room and get instant feedback about some of your questions. I hope you are feeling well and doing well.

 

[Pink Pearl]

Hi Kecca,
Welcome to the board.
What Joan said..."codswallop" (gotta remember that one-love it) is exactly true! Good heavens, where do they come from? I have stuck to the old light bulbs because the new cfl's can cause me to react. Haven't noticed anything with halogen yet. Can hardly wait til they come out with LED bulbs! I don't go to one of the better grocery stores as their lights drive my eyes crazy! To have someone who is supposed to know, dishing out that kind of ignorance is totally frightening! I've encountered a few here like that.

I am curious to hear what the doctor has to say on reading what you are bringing to him.
Sally

 

[kecca]

Thank you so much everyone for your kind welcome and wonderful information. I saw my GP today, and I gave him the printouts about fluorescent lights and lupus, and he found it interesting for sure. The big test is when I see my rheumy in a few weeks.

Joan, could you please send the links to those websites again? I can't seem to print them out again, and my GP kept my only copy...sorry!

 

[Joandublin]

Hi Kecca

Here are the links

http://www.dailymail.co.uk/news/art...hes-swelling-sensitive-skin-warn-experts.html

http://www3.interscience.wiley.com/journal/112206539/abstract?CRETRY=1&SRETRY=0

Heres another one for good measure. Lupus UK have a range of good factsheets. The attached one is on light sensitivity. See end of first paragraph, page 2.

http://www.lupusuk.com/factsheets/lightsensitivity.pdf

Best of luck with the Rheumy!

PS - you should be able to access the links from my original reply to your post but Im posting them again just in case. It can take a while to get used to Message Boards and how they work. Glad they helped!

Cheers
Joan:rose:

 

[Rose Maclean]

Hi kecca,

Welcome. Joanne and Clare are bang on. Many of us suffer with UV exposure, this means cloudy days as well as sunny ones, reflected light off grass and water, through windows etc. I also respond very badly to Fluorescent and halogen lights.

You go girl! Don't take no for an answer.

best of luck

Rose

 

[Joandublin]

Hi again Kecca

Here's another link which might be useful

http://www.crslight.com/true-light.htm

Im on a roll now...

Here's another link from the Job Accomodation Network, USA which suggests types of accomodations for workers with Lupus. If you scroll down you will see under photosensitivity:

http://www.jan.wvu.edu/media/lupus.html

Avoid reflective surfaces such as sand, snow, and concrete
Install low wattage overhead lights
Provide task lighting
Replace fluorescent lighting with full spectrum or natural lighting
Eliminate blinking and flickering lights
Install adjustable window blinds and light filters

I just wanted to also say that not all Rheumatologists are versed in the complexities of Lupus and it sounds like you have found one such person. If he still continues to believe that people with Lupus are not affected by fluorescent or Halogen lights then I think it might be time to consider getting someone who specialises in Lupus.

Bye for now
Joan:rose:

 

[kecca]

Thank you so much for all of those links! They helped me feel better about the symptoms I know I have been feeling. I have printed everything out, and I am waiting for my next appointment in a few weeks. I do think the recommendation to find a new rheumy is a good one. I have started me search today.

You have all been so wonderful, supportive and encouraging. I can't tell you how much it means to me.

 

[maryfrances]

Hi Kecca-- Without steroids, my skin reacts even through my clothing if sitting in a sunny window. i mentioned it to my rheum and she confirmed that can happen. I've also had a reaction using a 70 sun block. I guess there is no real "norm" for it
hugs
maryfrances