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    Old 04-19-2005, 09:04 AM   #1
    kimnyc
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    sun sensitivity?

    Hi all,

    I have a quick question about something I have been experiencing over the past couple of days.

    The weather has turned to summer here in NY. So, on Sunday, I decided to sit outside for awhile. I didn't think too much about it because I haven't really demonstrated any signs of photosensitivity in the past. Maybe some flushing to the face, but nothing major. After about 1/2 hour or so, I realized that the sun was a lot stronger than I thought, so I went in and got some sun lotion. It was an 8 SPF. I was outside for a couple of hours on and off.

    A little while later, I noticed that the back of my hand was itchy. I was scratching quite a bit and little pimply-type dots appeared. It stopped after awhile and I didn't think much more about it.

    Then yesterday I was standing outside talking to a parent of one of my students. I wasn't wearing any sun lotion. I was standing in the sun for about 15 minutes, and it was hitting my left side rather strongly. Well, last night wound up being very uncomfortable. My skin on my left arm stung and itched. The dots on the back of my hand came back and itched a lot! In the middle of the night, my left foot started to itch. I finally got up and took a Benedryl. I'm not sure if that helped the itching or if it just made me sleep through it, though!

    Today the dots are still there and it looks more like a rash. I don't have dry skin because I moisturize all the time. I haven't changed any lotions or done anything that would only affect my left side! If it was the sun lotion or something I ate, I think I would be suffering all over.

    I have been diagnosed with lupus and am currently on Plaquenil, Levothroid, Nexium, and Relefen.

    Any ideas?

    Thanks in advance!

     
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    Old 04-19-2005, 11:12 AM   #2
    VeeJ
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    Re: sun sensitivity?

    Hi, Kim. It may be in some people that sun sensitivity comes on gradually, then really takes a quantum leap. That's what happened to me, anyway. I had SCLE lesions for years, despite much doctoring. Anyway, the last spring I ever went out into sun *without* hat, long-sleeves & block, I was getting new rashes on top of old ones from as little as 10 minutes of yard work.

    Other thoughts: SPF8 may be low (I wear 32+). And did you reapply? Or perhaps react to the sunblock itself? Or can any of your meds perhaps increase photosensitivity?

    Maybe you should err on the side of caution until you work this out with your drs.? Take good care, OK? from Vee

     
    Old 04-23-2005, 06:25 PM   #3
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    Re: sun sensitivity?

    Hi Kim,

    I was dxed with lupus in 1999. Being out in the sun for even a little while makes me HOT, red-faced, and will often cause a flare. Bummer! I, too, wear a broad-brimmed hat, long sleeves, and slacks. My rheumy said that I could walk from house to car, plan a picnic in the shade in the late afternoon, but my days on the beach wee over. I read that it's safe to be outside when your shadow is longer than you are tall.

    Call me Lily - no tan for me!!! Like Vee said, up the SPF number radically on your sunblock!

    Wishing you well - Barbara

     
    Old 04-24-2005, 06:08 AM   #4
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    Re: sun sensitivity?

    Hiya kimnyc,

    I am so glad that you are being ultra careful of the sun. I stress time and time again not just here of course, but to all of the patients I have dealings with the danger of lupus flares and the dreaded sun. Of course the other thing of the utmost importance is the risk of skin cancer.

    I am not a medical doctor but I do have a lot of experience of lupus and associated symptoms. I have talked about the following condition a few times with people. I honestly think it might be worth looking into. PLE (Polymorphic Light Eruption). This is is no way associated with lupus but the from what I have learned it presents with the same type of symptoms you have at times. There is prickly heat but this is brought on by overheating and not as a direct result of being in the sun. PLE sounds like it is worth looking into.

    Keep well.

    goldenwings
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    I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

    Last edited by goldenwings; 04-24-2005 at 06:10 AM.

     
    Old 04-24-2005, 07:01 AM   #5
    kimnyc
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    Re: sun sensitivity?

    Thanks for your responses!

    Since I last posted, I have had three doctors look at my rash. It just so happened that I had an appointment with a new primary care (he gave me steriod cream which didn't help that much) and allergist. I also emailed a picture of the rash to my rheumy in NYC. All doctors seem to agree that it is the type of rash one gets from photosensitivity. Of course, they can't tell if it's from my meds or the lupus. The allergist actually said that "it's impossible to tell" the difference without taking me off my meds and there's no way I'm doing that!

    The allergist gave me the name of a sun block cream recommended by top NYC-sun doc. But, before I go spending big bucks on that, I'm trying a 45 SPF from the local drugstore. I now put it on every day no matter what. I was finding that, even sitting in the car with the bright sun hitting my left arm, the rash got worse. Right now it's much better, but it's not gone yet. The allergist said I might consider a biopsy if it doesn't go away or it spreads. What will a biopsy tell me that I don't already know? I'm not sure how I feel about that...

    Anyway. That's my update. It looks like my very pale skin is going to stay pale from now on. Oh.. and thanks for the polymorphic light eruption information. I will look into that!

    K

     
    Old 04-24-2005, 07:39 PM   #6
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    Re: sun sensitivity?

    Dear Kim,

    A biopsy on a lupus rash can tell a couple of things. The microscopic part can identify cell alteration typical in lupus rashes. The immunofluorescent part can identify immune "junk" build-up (immune deposits that should not be there).

    Prior to Dx, steroid creams (several) didn't help my SCLE rashes. Found out later they hardly ever help *SCLE* lesions... Dr. Wallace in his hardcover says retinoid (Vitamin A) derivatives can help this kind of rash, though.

    I'd always thought any 'ole dermie could figure out a rash. Wrong, wrong, wrong... I worked really hard for a lot of years in Westchester trying to get mine identified. A Mt. Sinai dermatopathologist (hand-picked by my rheumie) was the one who did my final biopsy & labwork & immunofluorescent stain tests. He's just about the nicest & most thorough medical professional I've ever encountered---with my rheumie also at the top of my A-list. If you want further info, give a holler, OK?

    Hang in there & good luck, Vee

     
    Old 04-28-2005, 11:12 PM   #7
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    Re: sun sensitivity?

    I have had the same problem for about 3 years now, only it seems to be getting worse and hanging around much longer than before. It only takes going out in the sun for about 5-10 minutes. It usually doesn't show up right away after sun exposure, but a few hours after going indoors. It gets itchy too. I have also noticed that when I am in the shower and it is fairly warm water, verging on hot, it seems to promote the skin to get red in those areas...almost like it's increasing inflammation. My rashes used to go away after a couple of days, but this one's been hanging around for about a 2 weeks. It's not super noticeable, but if I go out in the sun again for just a few minutes, then it becomes very noticeable. I usually get it mostly on my forearms and upper arms, and sometimes chest area.

    I haven't been diagnosed with lupus, but have some additional symptoms such as joint and muscle pains, skin problems since I was a teen, major fatigue, neurological problems such as idiopathic seizures and parasthesias, shortness of breath occasionally(although could just be allergies . My ANA was positive and dsDNA borderline. I have yet to figure out what is causing my flares...it's so exasperating.

    I have also wondered about PMLE, but with the positive ANA, it kinda makes me wonder whether a biopsy is warranted.

    Hope you get some answers soon. I'll be curious to hear the results. Take care.

     
    Old 04-29-2005, 04:33 AM   #8
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    Re: sun sensitivity?

    Dear vegasrose,

    Welcome! Would I be right in guessing you live in a very sunny climate? UV exposure can definitely incite flares and rashes, in people who are predisposed to get lupus.

    Are you seeing a specialist, meaning a rheumie? &/or a really good dermie?

    As far as having the rashes biopsied, perhaps it might still help, in order to speed up reaching a conclusion? For sure, that is for your dr(s) to say, but if you feel yourself going on "hold", maybe you would want to press for it?

    For me, the last biopsy results (incl. immunofluorescent stain tests) were EVERYTHING. Prior to Dx, I'd never had a positive ANA and they'd never caught any autoantibodies. Yet I was getting big rashes at least 4 times a year, plus fevers, chills, pain, swelling, anemia, GI & bladder problems, migraines, weight loss, hair loss, etc. My Dx was the SCLE "subset", with the "annular" (circular) form of SCLE rash playing the defining role in the Dx.

    FYI, like you, some of my problems went back to childhood & early adolescence. Then I kept adding stuff on. I wasn't Dx'ed until age 48.

    If you post but I don't for a few days, it's because I'm headed out of town; so please don't think I'm ignoring a post you might return.

    Best wishes, with hopes that you can get answers & improved health soon. from Vee

     
    Old 04-29-2005, 01:54 PM   #9
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    Re: sun sensitivity?

    Hi KMNYC,

    Plaquenil SIDE EFFECTS ?
    Skin rashes occasionally develop and hydroxychloroquine may make you more sensitive to the sun, so it is advisable to use the usual precautions of sunscreens and a hat if you are in the sun. Also, your hair may become a little bleached with the drug and rarely a degree of thinning of the hair can develop. -I got this from /www.rheumatology.org
    your sunscreen should be no lower than 15. check the lupus website.
    My son is taking this also. Be careful.

    mom frm bklyn.

    Last edited by mightymat; 04-29-2005 at 01:56 PM.

     
    Old 04-29-2005, 08:20 PM   #10
    kimnyc
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    Re: sun sensitivity?

    Thanks for all your replies!

    I went to my rheumy today, and she said that she's not going to send me for a biopsy. Basically, she feels that the rash was one of two things (took a week to go away) - #1 lupus and/or #2 a photo-reaction due to relafen. She asked me to stop the relafen to see if that does away with the photosensitivity. It should take about a week for the drug to leave my system, and she told me to take ibuprofen if any aches crop up (things have gotten better in that area, so she's hoping that the plaquenil will take care of it all).

    In the end, she feels that the rash was, in all probability, a drug reaction. I told her that, when the rash was exposed to the sun, it actually tingled and got worse. She said that was classic photo-toxicity. We'll see in about a week, I guess.

    In the meantime, I have to go for a echo cardiogram because I have some shortness of breath and discomfort when taking a deep breath. I can't say it's pain exactly. Discomfort is a better word. Again, the rheumy doesn't feel that it will be anything serious. And, of course, it's nice to know that there's nothing serious going on with me, but it does make me feel like "something serious" must be pretty awful.

    Again, thanks for all your replies/information.

    K

     
    Old 05-01-2005, 11:26 PM   #11
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    Re: sun sensitivity?

    Quote:
    Originally Posted by VeeJ
    Dear vegasrose,

    Welcome! Would I be right in guessing you live in a very sunny climate? UV exposure can definitely incite flares and rashes, in people who are predisposed to get lupus.

    Are you seeing a specialist, meaning a rheumie? &/or a really good dermie?

    As far as having the rashes biopsied, perhaps it might still help, in order to speed up reaching a conclusion? For sure, that is for your dr(s) to say, but if you feel yourself going on "hold", maybe you would want to press for it?

    For me, the last biopsy results (incl. immunofluorescent stain tests) were EVERYTHING. Prior to Dx, I'd never had a positive ANA and they'd never caught any autoantibodies. Yet I was getting big rashes at least 4 times a year, plus fevers, chills, pain, swelling, anemia, GI & bladder problems, migraines, weight loss, hair loss, etc. My Dx was the SCLE "subset", with the "annular" (circular) form of SCLE rash playing the defining role in the Dx.

    FYI, like you, some of my problems went back to childhood & early adolescence. Then I kept adding stuff on. I wasn't Dx'ed until age 48.

    If you post but I don't for a few days, it's because I'm headed out of town; so please don't think I'm ignoring a post you might return.

    Best wishes, with hopes that you can get answers & improved health soon. from Vee
    Thank you Vee. Sorry I didn't get back to posting earlier, but things are crazy around here on the weekends not to mention being the caretaker of my autistic son...it can get so time consuming.

    I am currently not in the care of a rheumie or a dermie. Though I have been to a neurologist on and off for a few years due to some neurological complaints.

    Yes, it is terribly sunny here...not to mention extremely hot in the summer, which usually just adds to everything and makes me feel like this: I spend most of my time indoors throughout the year, especially in the summer. I would probably be correct in saying that I am so pale that I would permanantly blind someone if I were to step outside with shorts on. I really dread the sun anymore.

    I had some bizarre skin problems when I was a teen that I never mentioned to anyone, not even my parents, because I was scared and afraid of what was happening to me. For instance, one time I got a really weird rash that would blister up and burn on the back of my legs. It has left permanent scars that are like large pock marks you would find from severe acne. Other times, my lymph nodes would swell up and get painful, especially in the neck and underarm area. And I spent most of my adolesence with not only some typical acne problems, but such extremely sensitive skin that just washing my face would make my skin red and inflamed. I remember having to use alot of foundation just to cover it up, and it would still show through somewhat with a purplish hue. It was awful. I also have a history of eczema and a few instances of some kind of scalp dermatitis. It's been a very strange past. Wish I could just get to the bottom of everything. Throughout my life I have always asked myself why I have so many skin problems, but it's only been lately that I have been seeking an answer.

    Well, it's late and I'm off to bed. I hope to hear from you soon. Take care.

     
    Old 05-02-2005, 06:07 AM   #12
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    Cool Re: sun sensitivity?

    Hi kmnyc

    Ask you doctor about Percaditis. If you are feelling discomfort in your chest ( most likely presure in your chest ) This is common for Lupus patients and treatable. My son tells me that it feels like a truck has parked on his chest. When he gets it the sympthoms usually subside within one or two weeks. My niece who also has lupus suffered the same sympthoms in the chest. She assured my son, as long as the rhuemie knows about it he/she can monitor it. Hope fully you feel better soon.

    Last edited by mightymat; 05-02-2005 at 06:08 AM.

     
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