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Posted 2/6/2009 12:56 AM (GMT 0)

Hello everyone:

This is my first posting and I have many questions but will start with this.  I have discoid lupus and Reynauds.  I can't get too cold and I can't be in the sun.  I feel trapped inside!  Even with meds I still get numb, sore fingers and discoid lesions.  Where I live now it's either too cold in the mornings and evenings or too bright (UV) during the day to do anything but go to work or do housework.  I have vacation time coming up in May.  Any ideas? I'd love to see how I do in a warm climate but don't know if that's do-able with the discoid lupus.  I've read I'm supposed to avoid "equitorial sun" so Hawaii seems out.  Or is it?  Has anyone out there tried it (Hawaii or Arizona, etc.) and not come back with a ton of new lesions?  If so, any tips?

Posted 2/6/2009 6:08 PM (GMT 0)
Hello Aloha!

 

Welcome to the forum. Your screen name is very fitting if you want to go to Hawaii!  I love it there....

 

I don't have a lot of experience with discoid Lupus. Mine is pretty much strictly SLE.  But, I have found that even in the warm, tropical locations, if I stick to the shade, I do very well!  When I vacation, I wear hats, and I tend to stay relatively covered up.  But not to the extreme.  Truly, as long as I have shade and sunglasses and my hat, sunscreen, I do just fine.  The shade is the biggest, most important thing for me.

 

I guess you won't really know how you'll make out unless you try it!  I'm a real advocate for just doing it! But with precautions and knowledge.  If you really want to go to Hawaii, plan it. Go for it!  Life is too short!

 

There will be other members with more tips for you too.  OH. You can buy cotton clothing that has UV protection in it.  I'm not sure where you can get it, but I know it exists.  That's a good thing to take too.

 

Happy planning!!

Ginny

 

 

Posted 2/6/2009 8:00 PM (GMT 0)
Welcome Aloha! Welcome to the forum! I hope you get some helpful responses. I don't have the discoid lesions, but I am terribly sun sensative some years. With me, it changes from year to year . . . but have spent some wildly sensitive years, where even walking down to the mailbox is too much sun. . . so I understand your fear. For me it causes big rashes, but not the lesions. It can also cause me to very achy. I have had good success with enjoying early morning walks and sunset walks. We do lots of campfires in the evenings too (weather permitting). It gives me the fun of being outside w/o the danger of the sun. I have found that my attitude about it is key in managing this difficult hide and seek with the Sun. We've even done the beach in the evening. I use a great big Man's fishing shirt in the car, because it will cover right over my hands. I stick my thumbs out the little hole being the wrist button and TAAA DAAAA!!! I've well covered right over my hands. I did get to enjoy the Riviera Maya, Mexico . . . last winter. I bought a full body skin suit that is meant for snorkeling. It is a thin nylon fabric but it is UV treated . . . I actually got to swim in the ocean. I still wore my hat and did manage to ruin a couple hats this way, but it was worth it to be out in the water. I was still careful to avoid the worst part of the day and I didn't stay out too long. But again, we made sure to be down on the beach before sunrise (which was really a blast). We were also able to enjoy the evenings because dark falls early and there are outdoor activities at night. I hope you find a good destination and just get creative to manage your issues. We had a blast! Blessings!
Posted 2/16/2009 10:54 PM (GMT 0)

Hi

I have discoid lupus and my local health shop recommended taking a B vitamin complex to improve my tolerance to the sun. It's supposed to be started a couple of months before a sunny holiday for example but she advised me to take it all year round as it may help.

I get discoid lupus particularly on my head so it's hats even on a dullish day which i hate but I soon suffer if I don't. I wear suncream all the time in Summer and to be honest I just stay out of the sun as much as possible. I forgot about the car and suffered a couple of times so when I'm out working I also cover up and suncream up. I have found suncreams (oils) you can spray on your hair for your scalp but I don't feel the protection is probably enough.

Sadly it means I can't bear the thought of a holiday somewhere hot and sunny, I always choose cool and not hot climates.

I also drink plenty of water. One of the firstn places I notice a lack of fluids is I get very dry eyes and drinking plenty of water helps reduce the problem and redness I can get.

Jill

Posted 2/20/2009 9:23 PM (GMT 0)
Hi to all
Thank you for your replies-especially to Jill who has discoid lupus. My eye doctor that I have to see due to the Plaquinil says he's heard of it but never seen it. It's difficult to have something that no one seems to know much about! My first flare was in July of 2007 after spending a few days in May in 90 degree weather, no hat, poolside. I developed a large, sore red area on the center of my scalp that my dr. did a skin scraping of and told me it was "nothing". It got worse, the next dr. told me it was ringworm (I work in a vet hospital) so I was on an antifungal for 6 weeks. No help. Hair falling out. It took a nurse practitioner who had worked with a dermatologist to immediately biopsy a lesion and within 6 days I had my diagnosis. By then my bald spot was 2 x 3 inches! Now I know I have to have sun protection always. I will definitely try the vitamin B complex-thanks for the tip.
I did notice on another posting that you have sore fingers-my Reynauds causes sores on my fingertips due to poor circulation, and I know my rhumatologist was looking at my nail beds for signs of redness that can indicate autoimmune problems.
Aloha 55
Posted 2/21/2009 8:26 AM (GMT 0)

Hi

I was told by my consultant that the baldness would never leave and that I was stuck with it for life. I have found though over the last year or so that little sprouts of fresh hair have appeared and the bald patches are definitely not as pronounced as they were or as red and angry. I'm also in a less stressful place in my life which has helped enormously.

The other thing I have found is the use of baby oil. It's very gentle but messy. When I have a flare up I will put oil on the area at bed time and wash it off the next morning. It makes a mess of the pillows but it seems to soothe it especially when the surrounding skin feels very dry as well.

The vitamins will take about 3 months for a build up to have any effect and I was advised to take them all year round - it's to do with the beta carotene. I think I said vitamin B but it's this - sorry!

'Oral Beta-carotene is prescribed to people suffering from Erythropoietic protoporphyria. It provides them some relief of the photosensitivity.' http://en.wikipedia.org/wiki/Carotene

Jill

Posted 2/21/2009 7:43 PM (GMT 0)
Hi
I have found also that my hair has regrown although sparsely. Even after a year the area is still uncomfortable to the touch. I haven't tried baby oil but my hairdresser told me that massaging the scalp stimulates hair growth so I have been doing that. Anything to help!
Aloha 55
Posted 2/21/2009 8:00 PM (GMT 0)

Hi Aloha,

I have alot of the same issues. Can't get too cold (not easy when you live in the upper midwest), can't get too hot (once again not easy), can't stay out in the sun . . . If I am out in the sun for more than 5 minutes, my issues just explode and I pay for it for months with flares. But always doing things in the evenings makes me feel like a vampire.

Took a trip to southern China and Hong Kong last year and am going again this year . . . lot's of equatorial sun (when it isn't raining!). When in China, I did as the Chinese to avoid the sun: I used an umbrella and wore breathable long pants & sleeves, SPF 80 sun screen. Also LOVE the south of France (my husband is from Belgium, so we make bi-annual trips to Europe and we generally try to hit the beaches there as well). Once again, a continent that does not pride itself on how tan they can get and don't look at you funny if you are taking preventative measures for your skin.

I know there are stores out there that sell UV Blocking clothing (pardon my faulty memory - I can't recall any of the company names- just do a google search and multiple companies will show up). The clothes aren't cheap, but they may offer you an option where you do not have to constantly live your life in the shade and after dark. I even found some funky hats (and I HATE hats!) that I deemed worthy to wear :-)

Good luck and I hope you choose someplace fun and sunny and warm! We got 4 inches of snow here today . . . YUCK eyes Fiji sounds nice to me right about now!

Posted 2/22/2009 10:58 PM (GMT 0)
Hi AlienWife
I actually just bought a hoodie from Lands End with SPF 50. Nice to know there is the possibility of a vacation-I just need to be brave and innovative! Thanks for the encouragement!
Aloha55
Posted 2/23/2009 12:03 AM (GMT 0)

Hi Aloha,

Coolibar is another good place to look. I like their sport hats and they have other sun hat options that are nicer than the big wide "grandma in the garden" sun hats I have found at most other places. They also have cute beach shirts and sun pants.

Let me know where you decide to go! (take me with if you have room in your suitcase ;) )

Posted 2/23/2009 12:26 AM (GMT 0)
Hi . . . I bought a neck to toe "skin suit" that is UV protective. It even covers my hands. I was able to swim in the ocean last year and enjoy the water for short periods. We went snorkeling too!! I was amazed at how well the suit protected my. Hubby was actually burned and I was fine! Just a thought. Blessings!
Posted 2/23/2009 12:28 AM (GMT 0)
Here is a link with a picture of my skin suit . . . its even on sale!! http://www.leisurepro.com/Prod/BLRLM.html Blessings!
Posted 2/23/2009 3:26 PM (GMT 0)
Thank you everyone!
I plan to check out those sites later today.

Aloha55
Posted 2/23/2009 11:57 PM (GMT 0)
Wow...I love the suit idea. I have family in Costa Rica and was wandering what I was gonna do about the sun there. I usually go two times a year and love it. Before I would bask in the nice warm sun all week but now I am gonna have to find something else to pre occupy my time! Shouldnt be too hard...it is so pretty there! I can't wait till I go back. You know, Last time I went in September, about the day after I got there...my joint pain and other problems went away. I actually stopped taking my pain meds and only took the really important ones the whole week and was pain free. Anyone have any idea why that would be?
Posted 4/3/2009 1:12 PM (GMT 0)
Hey y'all...I was diagnosed with Discoid lupus last summer. I had a small lesion on my scalp 2 yrs. prior to dx. I am now on plaquenil, wear sunscreen and hats during the day. This is all relatively new to me. We are going to the Bahamas on Monday, I am getting very anxious as time passes. I will wear 70 sunscreen and be very careful but am concerned. I have noticed that both of my cheeks get red at times my derm says it doesn't look like discoid but maybe rosacea. I am using metrogel. I've had no other lesions but the one on my scalp. What does the initial discoid lesion look like? Once you see it does it go away or is the permanent scarring already beginning? I'm glad people are discussing discoid on this board, I'll check back later...thanks
Posted 4/3/2009 2:39 PM (GMT 0)
Welcome rosesj:
Even though I'm sorry for your diagnosis, it's nice to know there are other people out there with the same problem that you can compare to and commiserate with.
The rosacea seems to be another part of the whole lupus puzzle. Before I knew about the discoid lupus, I had much worse rosacea. I tried the metronidazole gel but it didn't do a thing for me. Staying out of the sun due to getting the lesions seems to have made a big difference.
My initial facial lesions were just small red areas (pencil eraser size) on my forehead and the sides of my nose, sort of where you would expect eyeglass pads to rest. I have since gotten two more on my chin, even with sunscreen (although I don't wear the heavy duty stuff as often as I should). Only one has scarred so far. It has a little depression in the middle but over the year has faded and is not very noticeable. They seem to take about a year to go away. Don't know if that is typical for everyone or just me. Several have disappeared with no scarring. I think everyone is different and unfortunately I don't think enough is known about this! I don't even know how long it takes to have lesions appear after exposure. Does anyone out there know?
Good luck on your trip-I envy you!
aloha55
Posted 4/3/2009 7:21 PM (GMT 0)
Aloha,

   Thank you very much for the response.    I sometimes feel desperate just to talk to someone experiencing the same thing.  I'm still trying to figure out what I can and cannot do.   I had it for a few years, at least, prior to dx....didn't wear much sunscreen and never wore hats...and no skin problems....My doc. thinks I have a very mild case, but when I get on the internet I get scared to death....thanks for listening.    I'm a nurse prn married and mom to two teenagers.   I guess I just don't want my life to change..Rose

Posted 4/5/2009 7:54 PM (GMT 0)
Rose:
I've had a hard time finding others with discoid lupus but from everything I have read, if you're going to have lupus, this one isn't so bad! (How about that-something positive!) An expert on the lupus forum said if the lesions are confined to the neck and up for 2 years without any sign of other areas being affected, chances are very good that they never will be. Sounds like you're there and I'm half-way there. And even if it happened to progress to systemic lupus, it would most likely be a very mild case. More positive news!
I hope you have a wonderful time on your trip! Hope to hear from you on your return.
Aloha55
Posted 4/5/2009 8:46 PM (GMT 0)
Thank you Aloha,

   I am really looking forward to this trip, as are the teenagers.    I will get a handle on this discoid...it just obsesses me at times...I'm hoping that using the sunscreen, taking the plaquenil and wearing hats will protect me...my fear is what if these efforts don't?  When my cheeks turn reddish I don't know if it's discoid, rosacea or my reaction to the 70 sunscreen....I'm a control freak and hate when something rules me.  (not that it should)....I've got Irish skin and have never suffered from acne, so this is a new issue...sometimes I wish I had never been diagnosed...not really..I hope everyone has a wonderful week and I'll report back....one last question...do any of y'all participate in outdoor activities?   thanks...

Posted 4/6/2009 2:18 AM (GMT 0)
I like to participate in outdoor activity.  I just always make sure I have all the protection with me.  I retreat to the shade as much as possible. It sounds like you have everything prepared.  Sometimes, even when you use everything recommended, you'll still feel the effects of what the sun will do to you.  Sometimes it's not just the sun we feel, but the heat that will make us wilt... I hope you can enjoy the summer and that all your preparations work great for ya!

 

Ginny

Posted 4/12/2009 11:26 AM (GMT 0)
I think I did well in the bahamas. It's weird how well sunscreen works. I didn't get one bit of sun, which is sort of different as I used to love getting a little color over the summer. I wore my hat and used caution. I hung out in the shady area at the beach, for just a bit. I'll wait and see if there are any effects of the trip...so far, looking good.....my cheeks continue to be slightly flushed but derm said it wasn't discoid....hope everyone has a beautiful Easter
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