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smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 4/27/2007 7:19 AM (GMT -6)   
Has anyone had any problems with a sunburn since having Lupus?
 
I was sunburnt quite badly last weekend and now I am suffering big time for being stupid and not putting sun tan lotion on. My back and legs, where I am sunburned, have turned into a big red itchy chicken pocks looking mess, and is driving me crazy!!! My husband has been putting a cream on it for me and that helps take the itch out of it instantly but it doesn't seem to last long.
 
Next time I am out in the sun I will make sure I am covered with suntan lotion. This sure sucks, lol.
 
Connie  cool
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/27/2007 7:45 AM (GMT -6)   
Yes - I am much more sensitive to the sun ans burn much easier. Last week I took my daughter to the park and even though it was a cool day and I stayed in the shade most of the time, my face still got burned (I didn't think I needed sun block that day). Not only do I burn easier, the sun just makes me very sick and usually makes me flare.

Your sunburn sounds terrible and it does sound like you had a bad reaction to the sun. I really hope you start to get some relief soon. And, yes, the whole thing is really a bummer, especially with summer coming up. You gave us all an important reminder about being very careful in the sun.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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AnnieRae
Regular Member


Date Joined Nov 2006
Total Posts : 60
   Posted 4/27/2007 8:12 AM (GMT -6)   

Yes, I am more sensitive too.  Every summer we go on a fishing trip to Colorado.  The only thing exposed is my hands, I am totally covered otherwise.  I even put sunscreen on my hands but still seem to get an itchy rash by the end of the trip. 

I try to stay out of the sun as much as possible even though I am Native American and tan very easily.  We do have access to a pool but try to sit in the shade covered with a long sleeve shirt and hat.  It makes me feel tired and draggy the next day. 

It's sooo hard since I was such a sun lover.  But those days are over for sure.  Thought I might try some of the lotion tanning products that are out now and people really like.  Jergens for one.  Be careful and watch the sun     AnnieRae  :-)

There Is Always Hope


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 4/27/2007 8:22 AM (GMT -6)   

Thanks Hippiemom and Anna. You get an itchy rash to if you get a sunburn? So I am not a freak of nature? LOL!!

I love summer, it is my favorite time of year. I live in Ontario Canada and our winters start in November and don't end until May,lol. I would live outside all summer long if I could. I hate being cooped up in my house, but I tell you, no way do I want to spend all summer with an itchy red rash all over me.

I will still enjoy the sun, just in moderation and that ticks me off, lol.

Thanks,

Connie


 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/27/2007 8:55 AM (GMT -6)   
I'm sorry you got a bad sunburn. I too cannot go in the sun at all. Just this past year I started getting horrible rashes which I found out from my rheumy are subcutaneous lupus rashes and they are ugly. I had them on my shoulders, arms, and back and I got a couple on my cheek last time and they took forever to fade (I think I went through a whole bottle of makeup in a month). I used to love the sun and was always waiting for summer but now I dread it.
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/27/2007 10:21 AM (GMT -6)   
Hi Connie, I'm sorry that sounds miserable. I've heard of a lot of people that can't go in the sun because of lupus or at least they have to be covered with a very high SPF. I'm pretty much native american so I have kind of dark skin anyway. So far I havn't had any problems with the sun. knock wood!
Maybe benadryl would help the itching?
I hope this doesn't last long and you find ways to get outside without having to suffer for it.
Hugs
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


CityGirl
Regular Member


Date Joined Dec 2006
Total Posts : 239
   Posted 4/27/2007 10:51 AM (GMT -6)   
Sunburns can be so painful. It sounds kind of strange but you may want to try and take a milk bath. The lactic acid in the milk will very gently help loosen the burnt and dead skin from the burn and help shed it faster letting your healthy skin come through faster.

Pure aloe (not the kind in the bottle, the pure kind from the health food store) will also help. Keep yourself very well moisturized and look for a fragrance/paraben free moisturizer with lactic acid and be sure to drink tons of water. Also, cut down your salt intake as much as possible.

The one thing I have learned about lupus and sun exposure is not only does it ruin your skin and possibly induce a flair/rash, it also can be very damaging in the long term. Certain types of rays create double stranded dna's on your skin (this isnt just for people with lupus). Normal people have no trouble flushing them out but if you have lupus they can collect and cause problems over the long term. If you look on your lupus profile you will see a test done for double stranded dna's.

I am a sunscreen freak. I always have been, even before lupus entered my life. The best kind of sun prevention you can use is one that contains both a chemical and physical block. I posted other ideas in a thread not long ago with some other items I found. I have had great luck with the laundry wash that adds SPF to your clothing.

Hope you feel better soon!

goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 4/28/2007 8:42 AM (GMT -6)   

Hi there,

This is something I really feel strngly about.  I am a lupus patient who cannot go out into the sun.  Even the heat in the air is horrid for me.  The sun though is an absolute no-no.  If ever I need to get from A to B when the sun is out I wear loosely woven long sleeved cotton tops, trousers or a long skirt and have my head covered with a wide brimmed hat.  Also I make sure the back of my neck is covered.  Plyus lashing of sunblock.  I got burnt many years ago on my neck, and had the biggest blister you can imagine and was so ill for a very long time.  If ever I go on vacation, it is at the beginning or the end of the year when the weather is cooler and the sun is not so hot and dangerous for me.  I still take all of the precuations though.  Mind those clouds too, the sun can still penetrate them even if we don't actually see it. 

This explains it quite clearly I think:-

UV light damages cells in the skin (keratinocytes) causing them to die. In healthy people without lupus, these dead cells are cleared away quickly and any inflammation caused by the sun-induced skin damage is short-lived (sunburn). However in lupus patients, the skin cells may be more sensitive to sun-induced damage and there is increasing evidence that the dying (apoptotic) cells are not cleared away efficiently. As a result the contents of the dying cells may be released and cause inflammation. 

Not all lupus patients are affected by the sun but those of us who are have learned the lesson hard I think. Also the risk of cancer is always present. 

One other thing about UV rays is that fluorescent lighting gives off these as well.  So if anytime you feel unwell shopping in some supermarkets, or even working under these lights, this is the most likely cause.  Again thought, they don't affect everyone like this.  Do your eyes ever feel as though you need to squinty them up ?  Could be the lights.

If you do have to work under these lights, and they don't have a special lens, you can ask your employer to have them fitted.  Thing is though you do really need to wear sunscreen when out shopping in these large stores or working under these lights.  A lot of moisturisers now contain a sunscreen, so it is worth looking into if you are affected. 

Sorry this is so long, but is is something I am passionate about - you never would have guessed would you hee hee ??

Please take care.

goldenwings  yeah

Post Edited (goldenwings) : 4/28/2007 9:32:17 AM (GMT-6)


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 4/28/2007 9:46 AM (GMT -6)   
SUNSCREEN SUNSCREEN SUNSCREEN!
 
Thanks everyone for the replies about this. A week later and my sunburn is still itchy and red, although not as bad as it was a couple of days ago. I have learned my lesson the hardway. No more outside for any length of time without sunscreen. No way no how, SUNSCREEN IS GOING TO BE MY MIDDLE NAME,LOL. tongue
 
I never thought of the lights in grocery stores that way but will pay attention the next time I go shopping.
 
Thanks again everyone for feeling sorry for me, lol, my stupid mistake and will not make it again.
 
I hope everyone has a good weekend, no chance of sunburn today, it's raining here so inside I stay.
 
Take care,
Connie smurf
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 4/28/2007 10:30 AM (GMT -6)   
Hi Connie,
   The others had some great advice for you so nothing for me to add. Just wanted to let you know I hope this gets better soon. I've also gotten the itchy rash in the past and it is so annoying. Please take care and keep us updated. You are in my thoughts and prayers.
                                                          ((hugs)) Babs
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 4/30/2007 6:59 AM (GMT -6)   
Thanks Babs, while it is looking better, just red now and not all spotsy, it is still itchy and driving me crazy!! Yesterday was a beautiful day, quite hot out but I plastered sun screen on me and didn't get burned. Lesson well learned,lol.

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


MomofC&C
Regular Member


Date Joined Aug 2006
Total Posts : 32
   Posted 4/30/2007 8:53 PM (GMT -6)   
I too find that I sunburn much more easily and from what I understand, some of the meds we are on can increase the risk of skin cancer.  But, I found a wonderful product that gives you a tan without the sun or tanning beds.  I ordered some Tan Towels from HSN and I can tell you, they work!  I look like I have a real tan! 

Seronegative SLE '06 - IBD '06 - Kidney Involvement '07
 
Meds:
Sulfasalazine, CellCept, Topamax, Elavil


MomofC&C
Regular Member


Date Joined Aug 2006
Total Posts : 32
   Posted 4/30/2007 8:55 PM (GMT -6)   
Also, I found a wonderful sunscreen for when you are out in the sun.  It is called Coppertone Spectra and it has a SPF of 50.  I live in Florida and the sun here can be brutal, but if I use this sunscreen I do not get burned at all. 

Seronegative SLE '06 - IBD '06 - Kidney Involvement '07
 
Meds:
Sulfasalazine, CellCept, Topamax, Elavil


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 5/1/2007 6:38 AM (GMT -6)   

Hello everyone,

I am pleased that you have found a suitable sunscreens and are finding the benefits of using them.  As sunbeds are a definite no-no, fake tans are so popular too.  

Thing is though, even using sunscreen will not always stop the damage that can happen.  This is why it is recommended that we wear loose fitting tops, skirts/trousers  - preferably cotton - and also it is important to wear a large wide brimmed hat when out in the sun.  This is as well as using sunscreen.

More than half of lupus patients will be sensitive to the sun. The thing is sunlight can cause pre-existing skin rashes to worsen, actual burning of the skin and also increased activity of lupus in other organs within the body.  It is not clear why some lupus sufferers are sensitive to the sun and not others. It can develop at any point throughout the course of the illness.

It is so hard I know to not have a tan when others around look so good with theirs.  I personally have never had one in my life, but I think of myself as pale and interesting - but safe hee hee !! 

Take care

goldenwings  yeah



dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 5/1/2007 7:57 AM (GMT -6)   
I think that certain antibodies that we carry have a lot to do with the sun sensitivity. I have positive anti-Ro (anti SSA) antibodies and I have read so much on how this antibody is associated with sun sensitivity and photophobia. I think the anti-dsDNA is also. Good topic to research.
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


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dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 5/1/2007 8:06 AM (GMT -6)   
Here is some good info:


http://www.intelihealth.com/Affil/IH/ihtIH?t=8760&c=369153&p=~br%2CCNI|~st%2C4464|
~r%2CWSCNI010|~b%2C*|&d=dmtATD]http://www.intelihealth.com/Affil/IH/ihtIH?t=8760&c=369153&
p=~br%2CCNI|~st%2C4464|~r%2CWSCNI010|~b%2C*|&d=dmtATD

Post Edited By Moderator (Lynnwood) : 5/1/2007 8:57:55 AM (GMT-6)


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 5/1/2007 9:15 AM (GMT -6)   
Thanks for all of the great advice. I hate the thought of having to cover up when I am outside this summer but I also know that I can't go through this rashy sunburn thing again. It was horrible and I have no inclination to go through it again.
 
I have a sunscreen here that is strength 45 but will look to find one stronger. I used one kind before that was strength 60. I might look for that one again, I know it was really expensive but well worth it.
 
Thanks again ladies, you guys are great.
 
Connie smurf
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 5/1/2007 9:42 AM (GMT -6)   

Hiya Connie,

Some lupus patients are apparently eligible for free sunscreen or cheaper pricing because of their medical need.  May be worth looking into.  

I have personally have never asked because I hardly ever go outdoors anyway, so a tube of high factor sunscreen lasts me for ages.

goldenwings  yeah


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 5/1/2007 10:21 AM (GMT -6)   
Hi Goldenwings. To get this free sunscreen would I have to go through my Rheumy to see if they have that in Canada? It would save me some money for sure and that would be a big bonus.
 
Thanks, Connie smurf
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 5/1/2007 10:58 AM (GMT -6)   

Hiya Connie,

Do you have local chapters of lupus foundation near you ? If you are not sure, then contact  www.lupuscanada.org  they have so much information on their web site.

If you cannot get what you need from this site, then why not ask your pharmacist you normally use to get your medications ? He/she should have a rough idea of who qualifies and who doesn't. 

If not, then yes I would try asking your rheumy, especially if you do have skin involvement with your lupus.

Hope this helps. (Ooops don't know what happened to the colour hee hee) !!

Take care

goldenwings   yeah  


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 5/1/2007 11:05 AM (GMT -6)   
Thanks so much. I saved that site and will talk to my pharmacist and see what he can tell me. I am not sure what is up with the color here niether, but mine is going black and purple. Weird eh??

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 5/1/2007 11:20 AM (GMT -6)   

You are most welcome.  

gossamerwings  yeah


lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 5/1/2007 4:32 PM (GMT -6)   
I want free sunscreen too! I don't think our lovely NHS system provides that here but i'm gonna ask anyway. I too get terrible red raised itchy lumps if I'm stupid enough to not cover up. last time i got steroidal creams and a form of pirotin for the itching. My doc said it was a typical lupus reaction to the sun, photosensitivity, and I need to stay out of the sun. I suppose it has it's advantages, my freckles won't be quite so bad they join up, this summer! x x
Chillblain Pattern LE, tachycardia, unknown bowel problems, migraines.
One gorgeous daughter age 5 after many many IVF attempts


goldenwings
Regular Member


Date Joined Apr 2007
Total Posts : 81
   Posted 5/1/2007 4:59 PM (GMT -6)   

Hello lion,

What happens in the UK is that if the doctor thinks that you need to use a certain sunscreen because of your lupus skin condition, then he will prescribe it for you.  This will work out much cheaper than going to the pharmacy and buying it OTC.  

If you don't pay for prescription meds, then of course you will get it for free.  Only if the doctor thinks it is necessasry for your particuar condition though. 

Worth asking about I think.

goldenwings  yeah

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