what are you symptoms after sun exposure

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lilly120
New Member


Date Joined Aug 2012
Total Posts : 6
   Posted 8/5/2012 11:00 AM (GMT -6)   
I'm new here and have quite a crazy ride with this dd. I have never had a positive ana but have had a positive lupus band test. Its been a long haul and recently have been prescribed Plaquenil - but haven't picked it up yet, I wanted to try a Naturopath route first.

Recently I've had tremendously bad experiences after being in the sun but so bad, I'm not sure this is the typical reaction? I feel unable to breathe, tunnel vision, shaking internally, heart arrhythmias, feel like I may throw up, ringing in ears and intense malar rash (have had this since the beginning - now is fixed and becoming raised). Its like I am physically sick - is this typical? I guess I'm trying to figure out whether I am in denial or dealing with something else?

Please share! and thanks so much in advance!! Lilly

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 8/5/2012 12:52 PM (GMT -6)   
People with Lupus generally have some sort of sun reaction. Mine is usually more mild than what you've described, but I don't stay in direct sun for more than a few minutes. If you've been in direct hot sun for over 30-45 minutes, I could easily see these symptoms being fairly normal.

I do suggest that you use the plaquenil you have been prescribed. There are no cures for Lupus and this is the only medication known to slow down the progression of the disease.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 8/5/2012 1:03 PM (GMT -6)   
Yes, I have these reactions from the sun. Honestly, I am extremely vigilant about avoiding direct sun exposure. If for some reason, I am in the sun for more than a brief period of time I get as sick as you describe. And it takes several days or more before I am back to normal (or at least what is normal for me). And I have been on plaquenil for 10 years now - it does help! Hope you feel better.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

lilly120
New Member


Date Joined Aug 2012
Total Posts : 6
   Posted 8/5/2012 1:10 PM (GMT -6)   
Hi, Thanks so much for answering. I think I am stunned a little bit, I've had bizarre symptoms since I was 29 (11 yrs ago) and I am just wrapping my head around seeing it all form together into something definable. Everything you read is pretty general, so it's great to hear (but not great bc you have to go through it!) real descriptions of what others experience.

I will try the plaquenil, I'm in an allergic to everything state right now, aspirin, advil, wheat, dairy and eggs - so, I'm a bit reluctant but read allergies to it are pretty rare.

Take care - and thanks again!!

lilly120
New Member


Date Joined Aug 2012
Total Posts : 6
   Posted 8/5/2012 1:16 PM (GMT -6)   
Hi Fran, I posted before reading your post. Honestly, it brings tears to my eyes to hear I am not alone - its pretty darn awful and overwhelming some times.

I see you have severe allergies too! How do you deal with those? Is there anything besides avoidance? I can eat meat and vegetables and cannot take anything for pain.

Thank you, I really appreciate the response. I am going to try the plaquenil - I hope it works for me and I'm so glad it is working for you!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/6/2012 2:25 PM (GMT -6)   
If you're that sensitive to sunlight you also need to avoid fuorescent lights and halogen lights.
Yesterday I stayed in an ER room with my mom from 2pm to 11pm under fluorescent lighting and today I feel like I've been hit with a bulldozer. Every joint is achy and stiff. I hurt all during the visit too. At one point I got up because I was getting stiff and couldn't walk from the stiffness.
Joy
When life throws you lemons....
Pick them up and throw them right back at them! :))

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 8/7/2012 6:14 PM (GMT -6)   
Hi Lilly,
 
Edited to add the following:
 
Sorry, accidentally hit the enter button.  I am sorry you are having such trouble with the allergies.  I have had allergies all my life (53 years) but about 15 years ago they started going out of control.  My allergist and pcp were both convinced that something else was triggering the problems.  Wasn't until 5 years later (and many specialists) that I was diagnosed with lupus and started on the plaquenil. 
I, too, am allergic to all aspirin, nsaids, and ibupropin.  My pain reliever of choice WAS Darvocet (one of the only pain relievers I didn't react to), but of course that turned out to be the one the FDA withdrew from the market.  So I was very gradually introduced to Vicodin.  Anytime I start a new medication I have to do a "challenge" at the allergist's office.  It took three tries with the vicodine before I could tolerate even a mini dose. 
As the lupus progressed, I was prescribed Imuran.  I had a severe reaction and was not given a second dose.  I have been on Cellcept for the last couple of years and that has not been a problem.
 
As far as foods, avoidance is also my answer.  I eat meat and rice.  Some veggies (well cooked) and applesauce.  Salicylates (the aspirin allergen) are found naturally in many fruits and veggies.
 
Sorry for this long post, but you reminded me of me!  Hope you feel better! 
 

Post Edited (FW) : 8/7/2012 6:47:27 PM (GMT-6)


lilly120
New Member


Date Joined Aug 2012
Total Posts : 6
   Posted 8/8/2012 8:13 AM (GMT -6)   
Hi Joy, I hope your Mom is ok! Yes, I am very sensitive to fluorescent lights - I get migraines and just feel terrible - I first noticed this when working in an environment with many of them - I had to keep leaving work sick and finally put it all together. I tend to get a lot of systemic reactions and rashes. I have knee and small joint pain - creaking and cracking all the time, my knees will just give out on me and an all over flu like pain but I always thought with Lupus joint and muscle pain was overwhelming the number one symptom? Joint pain is there as well as stiffness but I find the other symptoms even more unbearable. I'd love to hear thoughts on this. I hope you are feeling better!

Hi FW, Amazing you too, these allergies are out of control. Really, I think I have kept my symptoms at bay (somewhat) by taking Motrin/Advil every night for years - and by being prescribed an inhalation steroid for all my breathing problems - but suddenly a couple of years ago my throat starting closing from Motrin, then to wheat, and throat clearing and very uncomfortable feelings with dairy. My first brush with allergies was in 7th grade, I was always in the pool and developed an allergy to Chlorine that landed me in the er. How did you find the plaquenil worked for? Thanks for your responses, it is so nice to hear from you!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/9/2012 12:54 PM (GMT -6)   
Mom's okay. It was an attack of gastroparethesis (she's diabetic).

My other symptoms are rashes and extreme fatigued right now.
I had to go with my father to the hospital while he had a hernia repaired. I had to spend two days sitting under fluorescent lights at the hospital with him. We're home now and I can barely walk. I'm itchy, achy, and my head hurts. I'm extremely fatigued.
Joy
When life throws you lemons....
Pick them up and throw them right back at them! :))

rhnicks
Regular Member


Date Joined Jan 2013
Total Posts : 27
   Posted 1/19/2013 8:30 PM (GMT -6)   
I'm jumping in here after finding this tonight. I do not have the dx of Lupus, I have FMS and back/joint issues but I am having a hard time with sunlight - more than 5 mins and I feel like I am on fire. Now I am VERY fair so it could be getting older I suppose but it's really terrible. I've tried to enjoy some time with friends and end up hanging out inside the whole time.

My question is this, does it happen so suddenly for you? Even with sunblock on I feel like I am cooking in an oven within minutes.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/19/2013 10:47 PM (GMT -6)   
Yes. I even have trouble with 3-way incadesent lights. My room is lit with LED light ropes now.
I went to a website to get clothing that has sun protection built into the fabric. I also have a sun protective hat and gloves. It lessens the effects of the sun and lights for me.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

KnitHappens
New Member


Date Joined Oct 2015
Total Posts : 1
   Posted 10/15/2015 7:47 AM (GMT -6)   
Hi. I am also new here and have no lupus diagnosis. I have fibro, tachycardia, trigymeny, IBS and photo sensivity. The sensivity has gotten progressively worse. I also get that "baking" feeling if I am in direct sun for more than a minute or two and get sharp headaches, muscle soreness and weakness, sharp and blinding eye pain and general malaise after exposure to even indirect sunlight for more than 30 minutes or so. The worst episode yet happened this past weekend. My family and I went to a BBQ which was outdoors. We were there for about 2.5 hours, and an hour drive each way made my outside time 4.5 hours. Almost all exposure was indirect, I stayed in the shade and covered up with clothing but still had such symptoms afterward that I thought I had the flu! I was sick, weak and tired, just totally miserable for two solid days. Today is the fifth day and I finally feel back to my normal chronically tired self.

Is this a common issue with lupus? The reaction I have to light is so bad that I avoid it entirely, which Is hard with a small child. Would talking with my doctor about possible lupus be a good thing? I really can't find any other condition out there that has these issues with sun exposure. Yes, also fluorescent lights, CFL's and heaven forbid I spend time anywhere with indoor uv lights! Any help or advice would be greatly appreciated!

Kristen

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/15/2015 8:19 AM (GMT -6)   
Yes, this is a common Lupus reaction -- but of course it could also be other things.

You should talk with your Dr about all your symptoms. If the Dr seems totally clueless, only then wonder out loud about Lupus. I believe it is important to let Drs brainstorm all possibilities before accidentally influencing their focus by mentioning a suspicion.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 10/19/2015 10:46 AM (GMT -6)   
Joy,

Sorry to butt in here. I see your mom has gastroparesis. My husband was recently diagnosed - he is not a diabetic. Do you mind emailing some of things that may have worked for your mom? My email is lisatortorello@gmail.com. Between my lupus and his injuries, we can't seem to handle it all. Thanks in advance.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/20/2015 7:15 PM (GMT -6)   
Lisa, it turned out her problem was from a malfunctioning gallbladder. They removed it and she's had no more trouble.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 10/22/2015 8:39 AM (GMT -6)   
Glad she has no more trouble Joy. Thanks! Hope she keeps well.
Lisa
Ulcerative Colitis (remission) on lilada
Reflux on dexilant
Recently low positive ana and now on plaquinal
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