I am new to the site… in hopes of finding all I can about LP. It is nice to know that there people that feel the same as I do. My question is… does sun exposure help LP?
Yes, sun exposure does help LP. My doctor has me laying in the sun for 10
minutes on each side once a day and it has helped them dry up. I think it
speeds up the process. She also said not to use sunscreen when doing this.
I would be interested in knowing this, too. I have noticed when I go to the
tanning bed three or four times a week it does help dry it up.
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I have had this for 3 years, I think. When I was first diagnosed, the Dr.
told me I could get in a light bed at the dermatology office for 2 minutes
(for $65) or go to the tanning bed. I went to the tanning bed for about 10
treatments, and the rash did go away, except for the leisions in my scalp, which
I ignored, and cost me a lot of hair!! I went back complaining about my hair
coming out and was given steroid shampoos, and mousse. which I am supposed
to use every day. That has helped, … also I was prescribed Plaquinil twice
a day. I don’t know if this disease will ever really go away!!
I’m to start Plaquenil (and have reservations…blindness??) I finally
scheduled the eye exam that is in conjunction with use of it. I’ve delayed
starting the pills for the past year. But my hair loss is so aggressive it’s a
must now.
Did Plaquenil really halt the redness and hair loss for you? Is it truly
the answer? How much loss did you have before starting on the pill? How long
have you used this pill?
I haven’t been offered any suggestions recently by my dermatologist except
for the Plaquenil. I’ve used clob for ten years and had a series of cortisone
shots into my scalp about five years ago. Derm tells me these approaches
“slowed” the progression, but aren’t slowing it any more and she says Plaquenil
is a “biggest gun”. Some people on this board use Cellcept but my Derm
doesn’t prescribe it.
What is the brand name of the shampoo and mousse you’re using? Their
benefit?
My hairdresser sold me VIVID by Mediceutical Laboratories (customer service
1-800-433-2903). It’s 100% sulfate free. But it is nearly impossible to
comb my hair after using it. Maybe I need a special rinse in conjunction with
it. I don’t shampoo every day anymore - now I only shampoo every third day
and use plain water to “re-fluff” on the days in between.
My friend has LP on her hands - disfigured her nails so badly - we
commiserate - which is worse - baldness or mangled finger tips? It’s a weird disease,
isn’t it?
xxxx Glenda
When I first developed LP of the skin I wasn’t sure if sun helped or
made it worse. Sweat was misreable so hot days were nasty. Did NOT
apply sunscreen as my skin was too sensitive, wore longs
sleeves/pants to hide marks, had been advised that sun might make
scarring worse, but did not hide from sun and think that maybe
moderation does help. (Especially as LP can flare up inteh winter).
Remember to tan with caution, however.
Did not realize that Plaquenil has as a risk blindness! YOWZA! Have
you discussed the anti-acne drug Accutaine? This also helps (though
no one knows why), and depression as a side effect doesn’t seem as
bad as blindness.
You don’t need to pay top dollar to get a mild shampoo. Read the
contents list and try any that is free of sodium lauryl sulphate
(SLS) – some inexpensive brands are fine. To go extra mild, try a
brand like JASONS that is sold at health food stores. Remember that
fragrances can trigger skin sensitivities, and also look for
fragrance free brands.
I get psoraisis on my scalp but not (knock wood!) LP. Still, my
dermatologist treats the scalp aggressively as LP of the scalp can
cause baldness and, being opportunistic, when my scalp flares up I am
vulnerable to getting LP there. When I get plaques on my scalp I use
a perscription shampoo, CAPEX, that contains a steroid, Fluocinalone
Acetate 0.01 per cent (once daily for one week – it needs to sit on
the scalp for five minutes so is a pain). I also have a steroid
lotion to apply to the scalp (and leave on), also once daily: ELOCOM,
which is Mometasone Furorate 0.1 per cent. I suspect that
Fluocinalone is in the same family as Fluocinonide, which is the
active steroid ingredient in Lyderm cream – the topical steroid many
people use to treat LP of the skin. (I’ve also rubbed Lyderm into my
scalp when I’ve run out of the other stuff or want to use something
on my eyebrows but don’t want to risk a runny lotion getting into my
eyes. It’s greasy but helps).
— gkmax
Hi Glenda… I think the plaquinil has done it’s job on my scalp. It is not
red anymore, and I think my hair loss has stopped!! I am very relieved about
that. I have to wear it very short … and do a comb over (like Donald
Trump) so no one really notices the patches but me. My beauty operator tries to
fix it sort of cute. The hair loss really scared me. I am using Clobex
shampoo 0.05%
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That last note went away too fast. Anyway I am using Clobex shampoo, and
Olux Foam, for a mousse. (clobestasol propionate 0.05%). My Dr. (derm) says
use it every day, but I don’t do it every single day, because I do have other
things I need to do, but probably 3 or 4 times a week.
I have been on Plaquinil for about 6 months. For the first 3 I had lab work
drawn monthly to check for anemia, among other things. The eye Dr. visit
will be repeated this month. They check to make sure your retina is ok.
Sounds pretty scarey. I have had no eye problems, and lots of people take this
drug… lots of arthritis sufferers take it. I take Plaquinil in the a.m. and
p.m., and eventually will take it once a day as a maintenance dose.
The best to you… and all of us. Where in the world did this come from? I
had 2 hip replacements in once summer, and that is when it all started. My
hips are great, but I guess I stress my immune system. (that is what the
derm says, anyway.)
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i have lp on my legs and i find that the sun and salt water from the sea is
the best form of treatment. if your skin is sencitive then try to keep the
effected area free from clothes,let the wind blow free on your skin.jim from the
uk.
Thank you all for your info… I decided to try the tanning bed… when I had this 12 years ago I do remember tanning, we shall see what happens! The derm wanted me to do the light therapy… Impossible! I am a stay at home mom and what do I do whith my baby while I’m tanning at the doctors office a few times a week… Let’s see how this works… I’m am willing to try almost anything… I look awful!!! My young newphews have asked my what is wrong with my skin so I can only imagine what strangers must think! UGH!!!
Best of luck to you. This disease is something else!!
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I HAD LIGHT TREATMENT AND IT DIDNT DO ANYTHING FOR ME.NATURE GAVE US LIGHT
AND SUN AND SEA WATER AND WE CAME INTO THIS WORLD WITH NO CLOTHES ON . WE CAN
ENJOY OURSELFS AT THE BEECH CHILLED OUT AND SWIM OR BATH IN THE SEA
WATER,TRUST ME ITS GOOD FOR YOU ,EVEN THE SUN WORKS ITS WONDERS AFTER YOUR BODY HAS
BEEN COOLED DOWN BY THE SEA WATER. IF YOUR SKIN IS SENSITIVE THEN TRY TO WEAR
ONLY PURE COTTON GARMENTS EVEN YOUR BED SHEETS SHOULD BE PURE COTTON. I HAVE
LIVED WITH THIS FOR TWENTY FIVE YEARS AND ITS A NIGHTMARE,BUT I TRY TO COPE BY
BEING BLIND TO WHAT OTHER PEOPLE MIGHT SAY.
Doesn’t matter what people might say!!
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Hello,
Sun light and light theraphy does not work for everyone. I had 10 light therapy sessions and it helped my back and abdomen. The area where I needed the most improvment , basically stayed the same. I can barely walk because LP being on the bottom of my feet and I lost my job due to this, so I was able to soak up a nice amount of rays, but it didn’t help. I hope you all find something that alleviates some of characteristics associated with Lp. We must remember, we are battling against a disease where researchers can’t explain why we have it. I am here for all of you.
Gwood004
I would like to modify my words from my last post. PUVA treatment did help my skin condition, but the bottom of my feet have basically remained the same. There are many forms of LP and our bodies react in different ways to the various methods of treatment, but our hearts are much alike and we are strong in mind and soul.
Gerry
thanks mouse!
you can get a uvb light home treatment with daavalin company. insurance will cover most of it?. they have many types. thanks cdwp.
Hi, Im new to the group and to LP. It began in Dec. 2018. And quickly spread, both hands, both backs of forearms, both legs badly, from middle of back down to legs, stomach, abdomen and just now starting on bottoms of feet.
Went to a dermatologist 3 mo. ago had a shave biopsy. The pathologist said results were confusing that it looked like 2 different things at same time, lupus rash and LP. Am always tested for lupus through my not so great rheumatologist and says always negative for lupus. Three creams later it is starting to look mostly better, unbearable itching is better.
Not sure if because of this cream or fact I quit taking my hydroxychloraquine 2 weeks ago which I have been on 2x per day for the last 8 years. Maybe a combo of the two. My problem is there is such confusing info out there about LP.
Some say being in the sun helps others say it makes worse, some say this is a rare disease only 1% of population gets (NORD) and some say it is common, etc… I am just so confused and with the very long list of completely horrible health problems I have I am also very discouraged. I refuse to cover up to please others, it is what it is and dont care what others think when they see my skin.
I am wondering with the heat and humidity we have had here in NY, sweating makes my LP burn and start the itching process all over again, does this happen to others also?
Im so very glad to have found others that have LP and am not alone with this ugly itchy pain in the behind autoimmune disease! 
Can you use suntan lotion for lichen planus when you have lichen planus
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Will a tanning bed clear the lip up