• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
lizzie

Sun And Scleroderma

24 posts in this topic

Hi everyone, I'm going to Portugal later this week to visit my dear old Dad (its his 82nd Birthday) and although delighted at the prospect of some warmth (its 21F at the moment) am a bit uncertain as to whether it is a good idea to be in the sun at all. I have always used a sunscreen (factor 15 or 20) but since being diagnosed with SSc have really not been in the sun, I know its not a good idea with Lupus, but not sure if is is also best avoided in SSc. The situation has not really arisen until now as living in the UK , especially this last summer, sun is an infrequent occurrence. Just wondered if those of you who live in sunnier climates have any opinion on the advsiability of keeping in or out of the sun.

Lizzie

Share this post


Link to post
Share on other sites

Hi Lizzie,

 

My doctor advised me to avoid sun unless using an SPF of 50 or higher. So that is what I do. I love the feeling of the sun on my skin and it warms my bones. As long as I use an SPF of 50 or higher, I do not burn and actually take on a nice golden brown. I think it has a lot to do with the meds you are on and whether or not they make you sensitive to the sun. That is my take on it anyway.

Warm hugs,

Mary B

Share this post


Link to post
Share on other sites

Hi Lizzie,

How great you're going to be with your dad for his 82nd birthday! Congratulations to him!

I had a very severe case of Psoriasis for several years, using methotrexate (MTX) to treat. I questioned my rheumatologist then, whether or not I could spend time out in the sun. The warmth felt so good to me, plus the sun/vitamin D was very good for Psoriasis. She confirmed that though the sun was good for psoriasis, it isn't for scleorderma. She did follow that up with using good judgment on length of time in the sun would be a good thing.

 

In other words, I'm sure your body will let you know when you've had enough sun.

 

I'm guessing that since you haven't been in the sun much, you'll know when you've been in the sun long enough.

I'm sure there's information on this that will be shared with you, Lizzie.

Have a wonderful time when you go smile.gif

Hugs,

 

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Lizzie,

 

I was told my my rheumatologist that I need a high sun screen so I use the one I have for the baby its water proof and I think its 50 also to make sure to always wear a large hat when ever I go outside in the sun.

 

Have a great visit with your dad and enjoy. Remember sun screen and a large hat.


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

Share this post


Link to post
Share on other sites

Hey Lizzie,

I live in Arizona, USA and avoid the sun with a big hat at spf 50 and still I tan like its going out of fashion. My arms are several shades browner than my pale legs. I also have super dark freckle like spots on only my forearms. I believe my rheumatologist called it hyperpigmentation.

 

Yesterday it was 90 degrees here. How absurd!

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Thanks for all your replies, I think you have pretty much confirmed what I suspected , that it is probably best to avoid too much sun and use a high factor sunscreen. I also have psoriasis and know that the sun is good for that, Its such a pity that what is good for one problem is bad for another! So sun hat and SPF 50 it is - although not sure that can buy it in the UK as certainly never any need for it here biggrin.gif. I am really looking forward to the warmth and hopefully a few days respite from the Raynauds. On Friday morning I intend to sit on the terrace, admiring the sea view drinking coffee and eating oranges and grapefruit from the garden- shame I can't stay there all winter!

 

Lizzie

Share this post


Link to post
Share on other sites

Hi Lizzie,

 

Glad you will be with your Dad. I believe some sun exposure (15-20 minutes) is a good thing so that our body can generate enough Vitamin D.

I do not know if you take any medications for Raynaud, I believe all major medications for Raynaud have a warning about Grapefruit.

Take care!


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

Lizzie,

 

A warm winter is very lovely... for a bit. I miss fall and winter. Here in Arizona it's warm, hot or scorching. I wanted to caution you about grapefruit. Grapefruit can have bad interactions with certain medications. I'm not a doctor or anything but I've read enough stuff to make me think twice about eating grapefruit... mmm... grapefruit so delicious.

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Thanks Kamlesh and Peanut for the warning re grapefruit- glad you are on the ball even if I'm not - I take Nicardipine and had totally forgotten that grapefruit is contraindicated, besides which will wreak havoc with the reflux. In fact should probably forgo the citrus altogether in solidarity with my son (he's coming too) who has renal failure and can't have it because of the potassium.Will just look at the trees and eat some lovely fresh bread for breakfast instead.

 

Peanut: Much as I hate winter I too would miss the seasons- if I had my way I would have permanent spring rotating with autumn. as I don't like it too hot either(not that summer here is that hot by Arizona standards). My sister used to live in Florida and she really missed the changing seasons as well. She's now moved to Georgia and she (and her dogs) like he climate much better.

 

Lizzie

Share this post


Link to post
Share on other sites

Lizzie I was told by my general practitioner to have suncream (at least factor 30+) on every day even when it's cloudy! So I use factor 50 especailly for my face & arms & wear a sun hat to shade my face as well when it is sunny.

Hope you have a good time in Portugal for your fathers birthday.

 

Take care

Jensue

Share this post


Link to post
Share on other sites

Hi Jensue, Thanks for the info. I have just been out to buy my factor 50 - was even reduced in price! My doctors have never mentioned anything about avoiding the sun. I don't know about you, but in this area there does not seem to be any patient education for those with scleroderma. What is really needed is some sort of basic guide when you are diagnosed. As well as information about scleroderma itself this could contain advice abut such things as sun expoure and what symptoms need to be reported promptly to your doctor. I would have found it useful even though I am capable of finding information out for myself and probably have a better understanding of the health issues than many. I think lack of information is a common problem for lots of diiferent patient groups- when my son was diagnosed with renal failure, I obviously spent lots of time reading things about it. I discovered that he should not take Ibuprofen, something that we had not been told by his doctors so had in fact been using it! Once I have finished the work I am currently doing I think I should make a start on a patient guidebook for those with SSc. Well better get off my soapbox and back to work!

Lizzie

Share this post


Link to post
Share on other sites

Hey Lizzie,

 

What's wrong with Ibuprofen?

When I was diagnosed he gave me a little brochure and sent me on my merry way... (sarcasm). The brochure brought me very little comfort or information.

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

Share this post


Link to post
Share on other sites

Hi Peanut, Ibuprofen (and other anti-inflammatory drugs) can worsen kidney function in people with damaged kidneys. Ibuprofen is particularly highlighted because it is one you can buy over the counter and is used for things like headache which respond equally well to paracetemol. If you have it or another similar drug prescribed by your doctor it is a different matter as they presumably have weighed up the risk/benefit ratio before prescribing it . In our family we now all just take paracetemol (not sure what it is called in the US) for colds/ flu/ headache etc.

re the information you got when diagnosed. Sounds worse than mine. It didn't start well as the rheumatologist obviously thoughI was mad as I had asked if I had lupus and when he said " no its scleroderma " I said, "That's good," like it was a better option! He then gave me a leaflet on Raynauds which recommended a website. He warned me about looking at other stuff on the web as they were inaccurate (presumably he meant they were too scary!) Anyway when I looked at the recommended website - the first words I read about scelroderma were: Scleroderma is the most disabling, disfiguring and deadly of the connective tissue diseases - It might be true, but how comforting is that when you have just been diagnosed- glad I didn't read the 'scary' stuff!

 

Lizzie

Share this post


Link to post
Share on other sites

Paracetamol is the same OTC drug known as acetaminophen in the US. Warnings exist for the use of this drug, also, especially for people with liver problems. It is important that we take into consideration the details of side effects and interractions of over the counter drugs in the same way we do with prescription drugs. My doctor cautions that we should not use more than 4mg (eight 500mg tablets) total of paracetamol in any 24 hour period, but allows me to take this along with the prescription anti-inflammatory I use.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Lizzie your rheumatologist sounds a bit like mine, he also just gave me a leaflet & circled the bit about Limited Sclerosis & told me not to look on the web because they where all scare stories!!! So when I looked at the reccomended site from the leaflet it shocked me to say the least. Still not sure about my rheumatologist because he doesn't seem to listen to what I tell him & just passes things over.

 

Ibuprofen is not so good for people with asthma, so I take pprescription meds from the general practitioner when the pain is too much.

 

Does everyone get a lot of pain? Is it just in the hands?

I get pain in my knees, lower back & thighs along with pain in hands.

 

Jensue

Share this post


Link to post
Share on other sites

I guess I am going to get yelled at here, but I love the sun and since I have stopped burning due to this, I have also stopped with the sunscreen. I know, I know. But then I was also one of the ones who used baby oil as a teenager! I love the sun and a deep tan that lasts all winter. And yes I am seeing signs of it, like the little back spots that are showing up on my legs where they weren't before, and they do make me worry at times, but only for about 10 minutes every other month. I figure if that is the worst that can happen through this whole mess, give me the warmth of the sun some more. I hate the cold and the wind and the gray of winter. Bring on summer! :P

Lizzie, have fun darling and give your dad a big hug from us all, dear! B)


I hope that your day goes well and you don't have any worries.

Share this post


Link to post
Share on other sites

As I understand it (and keep in mind I have no medical training at all), there are two things to consider regarding sun and scleroderma.

The first is that Vitamin D deficiency is very common in people with autoimmune diseases, including scleroderma. And sunshine will cause our bodies to manufacture Vitamin D -- which is a very good thing!

The flip side of it is that unprotected sun exposure is harmful for the immune system and it can cause even more damage to skin that is already damaged by scleroderma.

Read more about it on our main site, at:
Vitamin D Deficiency, Sunshine, and Scleroderma.


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.

Share this post


Link to post
Share on other sites

Kristen- you're a bad bad girl! Thanks for the good wishes- I will have fun in my FACTOR 50 and BIG BIG SUN HAT ( thats me trying to educate you Kristen!). seriously you really should take more care - I have friends who have had melanoma and at best its not fun and at worst its fatal. Thats the lecture over! Am now just going to sort out some summer clothes to pack, a bit of a worrying moment as I know the winter weight has started already.

PS my Dad would like it better if you were there to hug him in person!

Lizzie

Share this post


Link to post
Share on other sites

I am also a sun lover and unfortunately I am a redhead!! What about skin involvment? doesn't some kind of UV rays help with this? Are the rays the same as the suns rays and tanning beds?

Share this post


Link to post
Share on other sites

Hi Rachelle, when I was in hospital a couple of weeks ago I also saw the dermatologist and she suggsets soem UV treatment as not only would it be good for my psorasis but also siad could help with SSC skin thickening. I meant to read up about it but haven't , so don't know what is the difference is between the Uv treatment and natural sunlight - I assume ther must be otherwise it would not seem a good idea for those with SSc.

Lizzie

Share this post


Link to post
Share on other sites

I went to Bahamas in March- wasn't diagnosed until October. I used 30 sunscreen and got an all over tan. HA HA! I couldn't figure it out how my bottom and breast got tan until I got the diagnosis. It lasted for more than a year... Was it the sun or the Scleroderma? I Think both!

When people commented on my tan I just said thanks. No one knows what Scleroderma is...Got tired of trying to explain. It's like... Have you got two hours to discuss this?

However, people thought I was crazy when I told them I didn't get in the sun or tanning beds.

Have Fun!

I USE SUN SCREEN!!!!! B)


Diagnosed with Diffuse Systemic Scleroderma May 2005

Raynaud's, GI, esophagus, skin and lung involvement.

Share this post


Link to post
Share on other sites

I've been wondering about the sun as well. Going to Florida for two weeks in May/June, and although I've only been diagnosed with morphea, makes me wonder if I have to worry about the sun or not. We'll be spending a week in Disney, which means a week out in the hot and powerful sun! I am very fair skinned and I burn to a crisp easily! I have always been faithful with the sunscreen though. I do start UVB therapy on Tuesday, so that will give me a bit of a gradual tan. Will talk to my dermatologist about it when I see him in April.

 

Danielle

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now