Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Update On Me


  • Please log in to reply
14 replies to this topic

#1 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 31 July 2007 - 10:33 AM

Hi All:

Just got back from a 6 day beach camp trip. I was never so glad to see my nice air conditioned house in my life. It was over a 100 degrees each day. I had my second bout with sun induced Lupus rash since I was diagnosed 7 years ago. My body on the second day broke out in a bright red welts/hive rash. It feels like sand paper. I feel like I've been very lucky with NOT having a problem since I was diagnosed with Lupus and Sclero with the sun, because it seems most people do have a problem. This year something has changed. Each time I have been out in the sun, I break out. grrrrrrrrrrrrrrrr I am a natural born beach bum!!!

Had a good time though really, it was with my two kids and 4 grand kids. We played a lot, ate a lot and drank a lot. :)

It will take me a few days to catch up on posts, but know that I'm thinking of you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 31 July 2007 - 11:13 AM

Hi Sweet,

It's great to have you back! I'm glad you had a great vacation. We all sure missed you around here!

I'm sorry you got a lupus rash. It's nothing to mess around with. Sun exposure with lupus can even bring on sudden kidney failure, after even just one sunbathing. It might be that you are on other meds now that are making you even more sun sensitive. But you could always get a "bottle" tan, after using prescription-strength sun blocker. Lupus patients normally need stronger sun blocker than the usual over-the-counter preparations.

But, back to the point, it is GREAT to have you back!
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.

#3 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 31 July 2007 - 12:33 PM

Sweet,
I am so sorry you had that reaction to the sun. As if Scleroderma AND Lupus aren't enough. I hope it heals soon.
Where did you go? I am sure it was nice to be with your family.

Stay cool!!! Glad you are back!
Jennifer

#4 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 31 July 2007 - 12:57 PM

Thanks Shelley for the information. I need to get a grip on this new problem. I actually do a "bottle" tan, but where we were, it was virtually impossible to stay out of the sun. But trust me I will do something different next time! I didn't even know there was a prescription sunblock. I'll get some.

Hey Jen,

We went to a lake about an hour from here and found a great beach you can only get to by boat. So it was just our family and we sure had a great time. Boated, water skied, jet skied, tubed, wake boarded, it was a regular circus!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 kelowna52

kelowna52

    Silver Member

  • Members
  • PipPipPipPip
  • 242 posts
  • Location:Washington

Posted 31 July 2007 - 01:46 PM

Hi Pamela, so sorry you had such a bad reaction to the sun. I have found I can only be in the sun for a little while. I don't think I'll ever be able to live in the hot climates any more. I was a major Beach Bum, loved the sun, my skin shows it now, alot of sun damage. Nice to have you back, great times with the Grandkids, that's what it's all about.

Take Care

Jackie S.

#6 CFMBabs

CFMBabs

    Silver Member

  • Bloggers
  • PipPipPipPip
  • 180 posts
  • Location:England

Posted 31 July 2007 - 08:33 PM

Hi Pam

I've found the cure for your bad reaction to the sun ---- Come over to England!
We get One day, well actually 4 hours of sun and the past 2 months we've had no sun at all.
Seriously though, what kind of rash do you get? I hope that besides all your problems you did manage to rest up apart from your other activities. I'm not a typical Beach Bum more a sun bed Lizzard -- get me on that bed and I won't move till the sun does and it's not altogether for a healthy tan (There is no such thing) I just love being warm and free of all my heavy clothing.
I hope you are keeping otherwise well.

Best wishes
Barbs x

#7 jefa

jefa

    Platinum Member

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

Posted 31 July 2007 - 09:14 PM

Hi, Pam. Barbs is right about UK sunshine. We get one day in Scotland, too - it is the same day, but we don't get it until England is finished with it. :)

I had problems with the sun when I was taking Plaquenil, too. I have always been a bit sun sensitive anyway, so I have never been very outdoorsy. Still, it sounds like you had a great time with your family. I am sure your mind will be in replay mode as you rest up. Good to have your smiling face back on the board.
Warm wishes,
Jefa

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

International Scleroderma Network (ISN)

#8 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 31 July 2007 - 11:56 PM

Hi Pam,
Welcome back! I bet you need a vacation after the on eyou just had! We missed you around here. Please take care of the rash and yourself. I am a beach bum myself and I have no idea what I would do if I couldn't lay in the sun!!

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#9 CFMBabs

CFMBabs

    Silver Member

  • Bloggers
  • PipPipPipPip
  • 180 posts
  • Location:England

Posted 01 August 2007 - 12:24 AM

Jefa

I had no idea you lived in Scotland? I'm not too far away though -- Northern England and it's just as cold here as well. I've actually lit another fire and the coal merchant is due shortly for much needed fuel -- What am I saying? This is summer! I heard we're due an heatwave in August and then there'll be a water shortage and hose pipe ban!
I'm desperately trying to jet off to Greece where I know the weather is fine -- too fine in fact, they've had forrest fires.
Anyway I'm relieved to hear that I'm not the only one shivering -- lets shiver together.

Take care
Barbs x

#10 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 01 August 2007 - 01:28 AM

Hey Sweet,
I'm glad you got to get out with the kids.

peanut

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

#11 WestCoast1

WestCoast1

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 554 posts

Posted 01 August 2007 - 04:07 AM

Hi Sweet,
I am glad that your back...sorry to hear about your painful sun rash! I had one of those a year ago when I moved to a higher elevation, the sun just attacked my skin and I have never spent more than an hour in the sun since....its a bummer since I am also a beach bum.

On the brighter side, our skin will be extra protected from the sun and keep us from wrinkles and sun spots :)

Those moments with kids and grandkids are priceless, it sounds like you had a fabulous time dispite the sun rash!
*WestCoast*

********

#12 Bird Lady

Bird Lady

    Silver Member

  • Members
  • PipPipPipPip
  • 118 posts
  • Location:Southport NC

Posted 01 August 2007 - 05:06 AM

Sweet glad you had a good vacation, Welcome back, take care of yourself.
Wife
Hugs for All,

Julie (Bird Lady)

#13 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 01 August 2007 - 05:47 AM

Sweet,
Glad to see you got out and had some fun in the sun!!!!! Oh - what we sun worshipers are willing to sacrifice for those warm penetrating rays. So sorry that the lupus flared, but it sounds like you had fun in spite of it.

Welcome back!

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#14 Alexandra

Alexandra

    Senior Bronze Member

  • Members
  • PipPipPip
  • 46 posts
  • Location:Surrey UK

Posted 01 August 2007 - 06:19 AM

Rest well and welcome home!
I'm with the other shivering ladies,mind you here in Surrey today we have...wait for it .......a sunny day!!Whoopey!

I hope your rash is feeling a bit better.
much love
Alexandra

#15 Sweet

Sweet

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 01 August 2007 - 06:39 AM

Hi Everyone,

Thanks so much for all the "welcome backs" it's nice to be missed.

Barbs and Jefa, goodness, I don't think I could handle a climate like you are describing. I was born and raised in Seattle and we had similar weather to what you are describing, but truly did have a bit more sun than you do, however, it was so depressing! When I found eastern Washington and realized they received all 4 seasons, including hot hot hot sunny summers, I was out of there! Been here ever since and have never had a problem with the sun until now. :(

Barb's my rash is all over my entire body except for the parts where my little bathing suit was. :unsure: It's raised red welts and hives that itches like crazy, while burning at the same time. Everything I put on it stings!

I just got off the phone with my rheumatologist's nurse because I've had it for 5 days now and it's not changing. In addition to this my joints are hurting a lot worse than normal and I can barely get off the couch. She's going to talk with him, but think he's going to put me on prednisone. Joy.

Again, thanks for your posts!

Love you all!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)