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Skin problems and Information Video
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amyrose73 posted:
I was diagnosed with SLE recently. I have been feeling very alone in figuring out and dealing with my symptoms and flare ups. My biggest problems lately are the joint pain, skin problems (so dry and irritated that baby shampoo hurts), and the headaches. I try so hard to keep on going and not let it slow me down, but it just gets to me at times. If anyone has a suggestion for soap, shampoo, and lotion, I would greatly appreciate it. The last time I used any kind of cleanser on my face, it was one from my dermatologist, and it left my face red, tight, and in horrible burning pain.

My other question is about an informational video that I have heard of. My rheumy told me that there is a video describing lupus and what to expect. She said that it was written specifically for new patients and their families. I have searched online and on Amazon, and can not find it. Has anyone heard of this video? If so, what is the title? I really want to be able to watch it, gain a little knowledge, and to have my husband see it. If I have to hear "you never feel good" one more time, I'm going to lose my mind!!!
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Lupylisa44 responded:
Hi and Welcome!

This is a great place for you! You are not alone!!! We are here for your questions, stories and for you to vent your frustrations.

As for a soap/cleanser,I am not sure what could be more gentle than baby shampoo, Maybe, Cetaphil will work.

I am not sure what video you are talking about, but there is one posted under Resources on this page from the Nat'l Institutes of Health:

http://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/_no_50_no_0.htm


Lupylisa
With love, with patience and with faith, we'll make our way.
 
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TXDIYGal responded:
Hi amyrose,
I have incredibly dry and itchy skin but not painful except where my rash is. Talk to your dermatologist about your cleansing routine. Actually, it also has A LOT to do with how OFTEN you bathe as much as what you use to bathe. Try just taking a warm bath in baking soda, it softens and soothes the skin but shouldn't dry it out. I apply a little baby oil to my skin after bathing and rub it in real well, a tiny amount rubbed in to wet skin, then I pat dry with the towel. Don't use soap every time. Soap is very drying and you don't need to use soap that often! Just use soap maybe once or twice a week and use baking soda or only soap on those 'particular' parts that really need soap. You know - ; ) maybe just a side of the tub bath.
You may want to talk to your dermatologist about getting some lidocaine topical cream or ointment for the especially painful patches but NOT as an overall application. It is not appropriate for that type of use. The dermatologist prescribed that and an ointment called Fluocinonide .05 topical ointment for my rash and it helps tremendously. Obviously-this was prescribed for ME and you should ALWAYS be asking your doctor about anything you put on your skin. Fluocinonide is a topical steroid and Lidocaine is a topical anaesthetic. Eucerine is a good OTC thick cream to ease dry, itchy skin and dermatologists often recommend it, in addition to good old fashioned petroleum jelly. Have you tried an oatmeal bath yet? It is very soothing for temporary relief. Hopefully you will find something that works. I know my rashed area of skin is exquisitely painful so, know that you have my deepest empathy. Hurts to even have clothes touch my skin sometimes so hang in there! Good Luck!


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