Posted 4/30/2007 4:59 AM (GMT -7)
Thanks Babs, while it is looking better, just red now and not all spotsy, it is still itchy and driving me crazy!! Yesterday was a beautiful day, quite hot out but I plastered sun screen on me and didn't get burned. Lesson well learned,lol.

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Posted 4/30/2007 6:53 PM (GMT -7)
I too find that I sunburn much more easily and from what I understand, some of the meds we are on can increase the risk of skin cancer.  But, I found a wonderful product that gives you a tan without the sun or tanning beds.  I ordered some Tan Towels from HSN and I can tell you, they work!  I look like I have a real tan! 

Seronegative SLE '06 - IBD '06 - Kidney Involvement '07
 
Meds:
Sulfasalazine, CellCept, Topamax, Elavil

Posted 4/30/2007 6:55 PM (GMT -7)
Also, I found a wonderful sunscreen for when you are out in the sun.  It is called Coppertone Spectra and it has a SPF of 50.  I live in Florida and the sun here can be brutal, but if I use this sunscreen I do not get burned at all. 

Seronegative SLE '06 - IBD '06 - Kidney Involvement '07
 
Meds:
Sulfasalazine, CellCept, Topamax, Elavil

Posted 5/1/2007 4:38 AM (GMT -7)

Hello everyone,

I am pleased that you have found a suitable sunscreens and are finding the benefits of using them.  As sunbeds are a definite no-no, fake tans are so popular too.  

Thing is though, even using sunscreen will not always stop the damage that can happen.  This is why it is recommended that we wear loose fitting tops, skirts/trousers  - preferably cotton - and also it is important to wear a large wide brimmed hat when out in the sun.  This is as well as using sunscreen.

More than half of lupus patients will be sensitive to the sun. The thing is sunlight can cause pre-existing skin rashes to worsen, actual burning of the skin and also increased activity of lupus in other organs within the body.  It is not clear why some lupus sufferers are sensitive to the sun and not others. It can develop at any point throughout the course of the illness.

It is so hard I know to not have a tan when others around look so good with theirs.  I personally have never had one in my life, but I think of myself as pale and interesting - but safe hee hee !! 

Take care

goldenwings  yeah


Posted 5/1/2007 5:57 AM (GMT -7)
I think that certain antibodies that we carry have a lot to do with the sun sensitivity. I have positive anti-Ro (anti SSA) antibodies and I have read so much on how this antibody is associated with sun sensitivity and photophobia. I think the anti-dsDNA is also. Good topic to research.
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


https://www.healingwell.com/donate

Posted 5/1/2007 6:06 AM (GMT -7)
Here is some good info:


http://www.intelihealth.com/Affil/IH/ihtIH?t=8760&c=369153&p=~br%2CCNI|~st%2C4464|
~r%2CWSCNI010|~b%2C*|&d=dmtATD]http://www.intelihealth.com/Affil/IH/ihtIH?t=8760&c=369153&
p=~br%2CCNI|~st%2C4464|~r%2CWSCNI010|~b%2C*|&d=dmtATD

Post Edited By Moderator (Lynnwood) : 5/1/2007 8:57:55 AM (GMT-6)

Posted 5/1/2007 7:15 AM (GMT -7)
Thanks for all of the great advice. I hate the thought of having to cover up when I am outside this summer but I also know that I can't go through this rashy sunburn thing again. It was horrible and I have no inclination to go through it again.
 
I have a sunscreen here that is strength 45 but will look to find one stronger. I used one kind before that was strength 60. I might look for that one again, I know it was really expensive but well worth it.
 
Thanks again ladies, you guys are great.
 
Connie smurf
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Posted 5/1/2007 7:42 AM (GMT -7)

Hiya Connie,

Some lupus patients are apparently eligible for free sunscreen or cheaper pricing because of their medical need.  May be worth looking into.  

I have personally have never asked because I hardly ever go outdoors anyway, so a tube of high factor sunscreen lasts me for ages.

goldenwings  yeah

Posted 5/1/2007 8:21 AM (GMT -7)
Hi Goldenwings. To get this free sunscreen would I have to go through my Rheumy to see if they have that in Canada? It would save me some money for sure and that would be a big bonus.
 
Thanks, Connie smurf
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Posted 5/1/2007 8:58 AM (GMT -7)

Hiya Connie,

Do you have local chapters of lupus foundation near you ? If you are not sure, then contact  www.lupuscanada.org  they have so much information on their web site.

If you cannot get what you need from this site, then why not ask your pharmacist you normally use to get your medications ? He/she should have a rough idea of who qualifies and who doesn't. 

If not, then yes I would try asking your rheumy, especially if you do have skin involvement with your lupus.

Hope this helps. (Ooops don't know what happened to the colour hee hee) !!

Take care

goldenwings   yeah  

Posted 5/1/2007 9:05 AM (GMT -7)
Thanks so much. I saved that site and will talk to my pharmacist and see what he can tell me. I am not sure what is up with the color here niether, but mine is going black and purple. Weird eh??

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Posted 5/1/2007 9:20 AM (GMT -7)

You are most welcome.  

gossamerwings  yeah

Posted 5/1/2007 2:32 PM (GMT -7)
I want free sunscreen too! I don't think our lovely NHS system provides that here but i'm gonna ask anyway. I too get terrible red raised itchy lumps if I'm stupid enough to not cover up. last time i got steroidal creams and a form of pirotin for the itching. My doc said it was a typical lupus reaction to the sun, photosensitivity, and I need to stay out of the sun. I suppose it has it's advantages, my freckles won't be quite so bad they join up, this summer! x x
Chillblain Pattern LE, tachycardia, unknown bowel problems, migraines.
One gorgeous daughter age 5 after many many IVF attempts

Posted 5/1/2007 2:59 PM (GMT -7)

Hello lion,

What happens in the UK is that if the doctor thinks that you need to use a certain sunscreen because of your lupus skin condition, then he will prescribe it for you.  This will work out much cheaper than going to the pharmacy and buying it OTC.  

If you don't pay for prescription meds, then of course you will get it for free.  Only if the doctor thinks it is necessasry for your particuar condition though. 

Worth asking about I think.

goldenwings  yeah

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