Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Sunbathing


  • Please log in to reply
16 replies to this topic

#1 afii

afii

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 21 June 2007 - 10:14 AM

So whats your opinion about sunbathing and tanning if your diagnosis is sclerodema?
One of my doctors said that it is forbidden to be in the sun, but other said that it is okay.
And also what about the self-tanning sprays or creams - are they completely harmless for the skin?

#2 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 21 June 2007 - 01:49 PM

Hi,

I have Lupus as well as sclero and if I'm in the sun too long, I will get a rash. I DO sunbathe though....I'm a natural born beach bum. I am very good about using sunscreen however. My rheumatologist would like me to stay out of the sun especially after my melanoma last year. I am very very careful and I'm not out for long periods at a time.

I swear by self-tanners though. I have a couple of good ones and if you want to know the name of them, feel free to PM me.

I also will hit the tanning beds about once per week for 10 minutes only. It helps with my joint pain.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Sam

Sam

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Delta, Ohio

Posted 23 June 2007 - 02:44 AM

I still tan outside and in a tanning bed, but I dont get real dark, doing that isnt good for anyone, I also use a lotion that is self tanning. That works really well. My dad use to be out in the sun all the time and now every now and then he has to see the doctor to get stuff taken off. Its due to being out in the sun. So I try not to do alot out in the sun. But going out for about 20 minutes a day isnt too bad for you. Make sure you use sun screen and yes you can still tan with sunscreen. I think its up to you about whether you can be out in it or not. Use your best judgement. Also I have a friend whos husband has scleroderma and one of his treatments is using the tanning bed to soften up his skin. I beleive that it did help him some. Well hope this helps, Take care, Sam
Sam

#4 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 23 June 2007 - 03:03 AM

I am very sensitive to sun, so I generally stay covered up even on hot days when I am outside. I found this Pub Med abstract in the Scleroderma Newsroom:

Sunlight and vitamin D for bone health and prevention of autoimmune diseases, cancers, and cardiovascular disease. Sensible sun exposure (usually 5-10 min of exposure of the arms and legs or the hands, arms, and face, 2 or 3 times per week) and increased dietary and supplemental vitamin D intakes are reasonable approaches to guarantee vitamin D sufficiency. PubMed. Am J Clin Nutr. 2004 Dec;80(6):1678S-88S. (Also see: Causes of Scleroderma: Vitamin D Deficiency)

The abstract says, Although chronic excessive exposure to sunlight increases the risk of nonmelanoma skin cancer, the avoidance of all direct sun exposure increases the risk of vitamin D deficiency, which can have serious consequences.


Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 relicmom1

relicmom1

    Silver Member

  • Members
  • PipPipPipPip
  • 208 posts
  • Location:Colonial Heights VA

Posted 23 June 2007 - 03:32 AM

We have an inground pool and I don't get to use it often :( I have been told by my rheumatologist that being in the sun is an absolute no-no. I do cheat somedays when the weather isn't so hot and I just lounge on a float or sit on the steps for a while. I have the type of complexion that tans super easy and fast. It only take me about 15 or so minutes and I have a pretty deep tan, so I get yelled at all the time for being in the sun too much. I do have to be careful about coming back into the AC causing a Raynaud's attack. somedays ya just gotta do what ya just gotta do!! B)
Peace :)
Barbara aka relicmom1

#6 kobi

kobi

    Newbie

  • Members
  • Pip
  • 6 posts
  • Location:Australia

Posted 23 June 2007 - 03:48 AM

hi if your taking immune medications you are very sun sensetive and must be covered up , regards jenny

#7 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 23 June 2007 - 05:56 AM

Hello afii~
I think that a little sun is okay. I am at a high elevation so about 20 min. is enough for me....any longer and I'm toast....litteraly! Also taking certain medications such as Plaquenil can make your skin even more sensitive.

I think that sunsreens are find for the skin, and very necessary. I have heard of clothing that contains sunscreens, but I don't think that they are readily available, so that makes it very inconvenient.
*WestCoast*

********

#8 CraigR

CraigR

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 438 posts
  • Location:Escondido (near San Diego), Ca

Posted 25 June 2007 - 07:47 AM

Smoking used to be very fashionable (it still is for some). But how many of us would now look up to a smoker as wise and fashionable? Tanning seems to headed the same way. It's no longer attractive because it points to self inflicted health trouble - with the irony that something motivated by vanity eventually leads to unattractiveness.

Don't we have enough problems with scleroderma and the medications required?

Craig

#9 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 25 June 2007 - 12:27 PM

I read in another post that either scleroderma or the meds make you tanner? Is this right? Or is it just the sensitivity to the sun? Hum. I get super tan super fast naturally and if I don't wear sunblock I'd be crispy, crispy well done tan?

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#10 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 25 June 2007 - 12:30 PM

There is an interesting article dealing with hyperpigmentation of skin that has just been added to the site on the Skin Involvement page (under Hyperpigmentation):

Do You Have an Autoimmune Disease? Why You Should Beware of the Sun



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#11 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 26 June 2007 - 03:08 AM

I live at the beach and am outdoors a lot. I go to the beach on weekends and am there all day. I sit under an umbrella and wear sunscreen but I am still very brown. The interesting thing is I am brown even under my bathing suit! My slero dr. says people with scleroderma like the sun, too.

I heard that sclero can make your skin darken. I stay tan all winter. The only thing is I have blond hair and blue eyes so I get a few stares from people. In the off-season I am always being asked if I went away.

ISN Artist

#12 Elehos

Elehos

    Silver Member

  • Members
  • PipPipPipPip
  • 196 posts
  • Location:Upstate NY

Posted 26 June 2007 - 04:59 AM

Hi Afii,

That's something you'd have to take up with your doctor, but I have to get about 10 to 15 minutes per day. Although I haven't had any formal diagnosis, it seems that I might have a vitamin D deficiency, and my body isn't absorbing it from food or supplements. The calcinosis began to slow considerably and the pain levels dropped once I spent at least a little time outdoors everyday for a few weeks. I prefer early mornings or late afternoon when the sun isn't as strong since it has been years without being in the sun, I can react horribly to strong, direct sunlight, and burning isn't desirable at all. Tanning isn't the objective here, but even so, with both lupus and sclero I do have to use caution.

Peanut,

My face always looks like I've been in Tahiti, except for the areas that are losing pigment. That was one of the first signs of sclero for me it seems, and since it began in winter no one could say it was "normal." My skin has darkened pretty much all over, which is nice in a way considering that I always had pasty legs that didn't like to tan.

Both of you take care, and best wishes to both!

Elehos

#13 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 26 June 2007 - 07:06 AM

Great article, peanut. Thanks for calling it to our attention (and to Janey for researching its credentials and adding it to the site).
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#14 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 26 June 2007 - 12:14 PM

My skin is naturally dark and I have always tanned quickly and easily and kept it. People ask me in December if I have just gotten back from somewhere sunny.

I am an outdoor person. Always working in the yard or at the park or beach with a gaggle of kids. I wear T-shirts and capris mostly and sunscreen of course. I don't lay out and "sun worship" like I did in my teens though.

I am embarrassed when people comment on my tan - like I shouldn't have it or something. I'll admit I do look better with a tan than without.

I have been more contientious about the sunscreen since starting Cellcept. But I won't give up my outdoor lifestyle for anything. Living in the Pacific NorthWET, you have to take advantage of the good weather when you get it!

B

#15 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 17 May 2013 - 07:06 PM

This is just a reminder for happy fun in the sun with scleroderma, because summer is fast approaching (for those of us who are not Down Under).

 

It is a good time for us to get our Vitamin D levels checked and to see whether we need to supplement with sunshine and/or pills.

 

And to stock up on heavy duty sunscreen and broad brimmed hats for those times when the sun would pose an overdose for us.

 

For some heavy summer reading material, you may want to peruse Causes of Scleroderma: Vitamin D Deficiency.

 

What are YOU doing to prepare for summertime with scleroderma?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#16 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 18 May 2013 - 04:11 AM

Oh, I know the answer to this one!!

 

I have my wide brim sun block protection hat, sunscreen, sunglasses, long sleeve shirt, long pants, and beach umbrella packed and ready to go. I will be at the beach everyday I can!

 

I can't wait! The ocean is my meditation.

 

As I mentioned previously, scleroderma made my skin unnaturally dark all year long. I couldn't sit in the sun because it made my skin hurt and made me itch. It looked like I sat and baked all day, though. Over time, as my skin softened, the strange darkness has faded some but I am still tan. I am always being told by doctor's to stay out of the sun and then I tell them how careful I am. I look tan, but it if you compared exposed areas to areas that haven't seen the sun in years there isn't that much difference in color. I have had some small skin cancers removed since my kidney transplant, the anti-rejection meds cause skin cancer so I do have to be extremely careful.

 

I AM as careful as I possible can be, I go for skin cancer checks twice a year, I wear hats and sunscreen when I am just going outside in the sun. My vitamin D levels are normal, and it makes me feel good. 

 

Scleroderma took so much away from me. It took a job I loved, my social life, the use of my hands to create art, my morning runs, my mile swims, my ability to walk along the sandy shore, many days of my life by sitting in a dialysis chair, hospitals, and doctor offices...

 

I will not allow scleroderma to take away

miocean

 

 


ISN Artist

#17 NorthStarHope

NorthStarHope

    Senior Bronze Member

  • Members
  • PipPipPip
  • 72 posts

Posted 18 May 2013 - 06:24 PM

Dear miocean,

  Once again you've given me strength and support that I am thankful for!! :thank-you:  :balloons:

 I almost would believe that my sister had written that very last paragraph that you had written. Scleroderma has seemed to taken everything away from her and sitting in that dialysis chair and hospitals are just all too common, but even through all this my sister remains strong. Actually she now has a new grandchild; this is her first one and I believe this will give her strength!!

 

                                                                             Wishing you all the very best!!!

                                                                                          

                                                                                           Sincerely, northstarhope*


northstarhope* :emoticons-i-care:  :thank-you: