The Sun

OK I have a question and I'm wondering if anyone can help.  I have been diagnosed with Lupus and my Rheumy tells me to "stay out of the sun" but here's my problem/question.  I already have a great tan and I don't have any reactions when I have been in the sun.  As a matter of fact I feel being outside and also in the sun actually helps me feel better.  Now I am not talking about getting burned because that is not good for anyone but I do feel better after being outside and I already have a very good tan.  What is supposed to happen when a person with Lupus gets in the sun.  Do you have a dermatalogical response like hives or a rash or does it bring on a flare?  I feel as though being in the sun more over the last month has helped me feel better so I am really wondering.  I also asked this question in the Lupus Forum.
Thanks
Joni

[kitonthemoon]

I'm not sure what damage sun will do when you have Lupus.....perhaps the drug might react to sun, like some antibiotics do.  Check.......WebMD, Mayo, Drug.com, etc to find out.

Stay positive.in frinedship

[Joni686]

Thank you.  From what people are telling me in the Lupus Forum the sun makes you either break out in a rash or make a flare occur - meaning pain and fever and everything that goes with lupus.  Thank God I haven't had that happen to me (they say some people are not photosensitive) because I feel so much better when I do spend a little time in the sun.

Thank you for your help.

Joni

[Jody515]

That is a question I intend to ask my doctor on the 27th.  I have also been told to stay out of the sun by the first doctor I was going to.  I do not go out in sun to tan or anything like that & I do wear spf protection, but I was told to totally avoid the sun, that I could only be in shade so it is my intention to find out from the doctor I am now seeing if I do have to avoid the sunlight as that is quite hard to do.

[krndhn]

I too was told by my rheumy a year ago to stay out of the sun, when I was first diagnosed.  I'm an outdoor person with a perpetual tan and never burn.   I can always be found working in the yard, or in the pool in the summer.  Last summer I stayed out of the sun from July on because of his warning.  Recently I asked my PCP why I needed to stay out of the sun, what would happen if I didn't, etc?.  He told me I didn't have to stay out of the sun, that I didn't have the "rash' kind of lupus,  Apparently there are 2 types.  In early June I had so many symptoms going on , and it was time for my rheumy visit. I told him about the terrible leg and hip muscle weakness I was feeling, and general  yuckiness - he acted like I was just a complainer because that couldn't be lupus.  After I complained enough, he ordered a special lab test which came back severe VITAMIN DEFICIENCY.  Do you know how the average person gets the required amount of Vit. D?  FROM THE SUN!!  He put me on megadoses of Vit. D for 6 weeks - took the last one yesterday.  And by the way, I spend several hours a day now working in the yard again - but don't forget the sun screen!.

You only need 15 minutes of so of sun without sunscreen  for the  required daily amount  of Vitamin D according to all my research.  YOU MAY NOT BE PHOTOSENSITIVE EITHER!  Good luck.......Karen

[PlateletGal]

You may want to google "Dr. Trevor Marshall" and read his research  that was recently submitted to the FDA on vitamin D. Dr. Marshall believes that vitamin D deficiency may be a symptom of the disease and supplements can make it worse. I agree with this and know that at the height of my illness, I had photophobia (intolerance to sunlight). That was my body's way of saying that it couldn't take it anymore.

Vitamin D is not a true vitamin... it is a secosteriod hormone. That is why you can feel good after being in the sun and sometimes feel worse. It is just like the steriod effect.

Best,

PlateletGal

[krndhn]

I'm aware of the Marshall Protocol - however I've also researched  beyond that - try this site and check out these responses to his "theory."

http://www.immunesupport.com/library/showarticle.cfm/id/5784

[krndhn]

Sorry, that last post was meant for you, not Joni

Karen

[PlateletGal]

Hi Karen,

Here is a recent paper that Dr. Marshall submitted to the FDA on vitamin:

http://www.ncbi.nlm.nih.gov/pubmed/18200565

The only thing I can tell you is that I, along with many others, am actually healing from this disease on this protocol. Everything that Dr. Marshall has stated about vitamin D and sunlight has been proven to be true (in my case anyway). For instance, when you are on this protocol, you have to avoid sunlight... especially at the beginning of the protocol. If you don't, you could have a reaction and I've had reactions before... so I know that what he and the volunteer medical professionals (all who have done the protocol or are currently being treated on it) have stated is true.

I agree that a low vitamin D is not the cause of the illness... it is the result of an illness. In fact, I remember a member on MedHelp who had posted because she had Epstein Barr Virus and a low vitamin D level. She was stunned at her vitamin D results because she lived in Florida and had a tan. She posted later to say that she was recovering from her illness and her vitamin D level had gone up as well.

[PlateletGal]

P.S. --- When I complete this protocol, I shouldn't have to avoid the sunlight and foods with vitamin D anymore. The vitamin D dysregulation should be gone by then and vitamin D shouldn't rapidly convert to the 1,25 hydroxy anymore.

[krndhn]

Hi PlateletGal,

Guess I can't argue with that!  However I started feeling much better after the 1st 50,000 UI of Vit. D, and now I've finished 5 weeks of Vit D (1 a week) and the symptoms I had, (which were classic symptoms of D-deficiency) are pretty much gone now.  I can't say it cured the lupus, but I feel better.  And I have gone back to working outside in the sun with no problems - (I never did have a problem, just stayed out of the sun because the dr. told me toId to)  and I personally believe that the lack of sunlight contributed the D defiency, in my case.  I'm glad you're healing now matter the reason!

Karen

[PlateletGal]

Hi Karen,

I'm not surprised to hear that you are feeling better taking vitamin D. It is the steriod effect.... just like taking steriods. (sometimes you feel better and other times it makes you feel worse).

In my case, I live in Arizona so I shouldn't have had a vitamin D deficiency. But if you look on the MP site, pretty much everyone there has a vitamin D deficiency.

[JustJessica33]

I have SLE and RA and I have to stay out of the sun because when I go it it for too long I break out in a terrible rash over my right elbow and it is now starting on my left knee.  It is a raised red itchy scaly rash that spreads.  I fisrt got it during tx for HCV, and it has been there ever since, if I keep my arm covered it seems to go away with cortizone cream, otherwise it just stays and grows.  I think it is called discoid lupus, but dont quote me on that.
You are very lucky....enojoy the sun, I havent had a tan in three years, and I grew up on the beaches in California.  

[PlateletGal]

Your body is obviously telling you that it cannot handle sunlight. I think when our illness reaches a certain point, this will happen to all of us with "autoimmune" conditions. I know in my case, I had intolerance to sunlight.

Best,

PlateletGal

[Joni686]

Thank you all for the great information.  So far, I am able to be in the sun and I pray it stays that way.  I have always had a great tan with exception of the last five years because all I did basically was work work work.  I thought about joining a tanning salon back then but I was even too tired and or it was too late to make it there before it closed.  The first six months I was sick, starting last July I wouldn't have felt like being in the sun because I just felt so bad I wouldn't want to be hot.  But last October (had been off work since July) when I realized I wasn't going to just get well and go back to work I got very very depressed.  I started having panic attacks while laying on the couch watching TV.  I remember one day making myself walk out on my back patio and I closed my eyes and put my face to the sun.  It felt so warm and so relaxing and it just calmed my anxiety I was having about how my life had been turned upside down.  Now I make it a practice, even if I am sitting on my covered porch to spend more time outside.  Recently, I had a new neighbor move in next door and that house has a pool so I've slowly gotten into the sun.  I don't lay out and fry the way I did when I was a teenager but I kid you not, I feel like being in the sun is healing me in some way.  I don't even care to know why or how but if nothing else mentally it is healing for me.  And... I have a nice little tan again.  :D
God Bless all of you.  I am so glad we can come here and connect and share our thoughts and feelings.
Joni

[Joni686]

Oh also my Vitamin D was fine on my lab work.