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02/14/2010 10:04 AM

had enough....

staboogieo31
 
Posts: 1
New Member

hi everyone.. Ive had this for years, no dr.s ever knew what it was up until last month when I found a new derm who finally figured it out! Hooray!(I think)? He wants me to do the light therpy which i think would be a waste cuz the sun USED to make it go away, but not anymore...why do they keep insisting on the steroid creams when we keep telling them they dont work? My skin is looking CRAZY!!! Its weird cuz it's only really on the front of my body with the exception of my arms. I just want to be able to wear a t shirt again without people looking at me like i have the plague.... But i am SOOOOOOOOOOOO glad I found this support site, I dont feel alone anymore!!!
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02/14/2010 11:12 AM
avsgirl19
avsgirl19  
Posts: 161
Member

Hi staboogieo31

I'm so glad you found us! I hope we can all help you through this. I know what its like to be walked "around" not walked by. I also feel like people look at like I and contagiously diseased.

Many of us have diaries that may help you learn a little more about us.

Feel free to contact me anytime

jenlargent@msn.com

303.241.3288

Smiles,

Jen

group Leader

Life isn't about waiting for the storm to pass, Life is about learning to dance in the rain


02/18/2010 02:06 PM
cantfindaname
Posts: 7
New Member

Welcome to the group,

I have had 19 light treatments and have found them very helpful. Next week I am to have my last treatment and then will wait to see what happens.

I am not on any creams, meds etc, Just the light treatments.

My Pleva spots have started to clear up. I still have a few small breakouts , but nothing to what i use to have.

Again, welcome to our group.


04/13/2010 10:20 PM
kjranta
Posts: 1
New Member

Hey, I'm new here, I was a 15 yr old female, when I was overcome with pityriasis, I was told it was somewhat rare in girls going through puberty, I suffered for 14 years, before I was finally diagnosed right. YAY! I control my symptoms with tanning beds 3 times per week, other wise I'd look really akward running around in the dead of winter with tan skin brushing a foot of snow off my car! lol I get checked every 6 months of any abnormalities from my tanning. I gotta say, love the outdoors, being able to wear whatever I want! Good luck to everyone out there! You aren't alone! Anyone at Anytime can message me, even just for idol chat!

06/04/2010 02:29 AM
LeahMariex3
LeahMariex3  
Posts: 475
Group Leader
I'm an Advocate

Sunlight definitely helps me! My new doctor has given me better treatment, and I am glad there is some hope after all.

06/07/2010 08:39 AM
elseaeff56

hey Leah,

I was using the light box at the doctor's office. I had a 45 mile round trip (with gas so expensive, this is a lot) three times a week.

I'd have to pay a $20 copay every time I used the box. While the nurse was setting up the timer, etc. she told me that a lot of my doctor's PLC patients go to tanning booths for their sunlight, it's much cheaper and does the same good.

I was told to use the tanning BOOTH, you don't want to stew in anyone elses juices. Work your way up to 5 minutes a day (don't burn - it's the worse thing to deal with PLC when burned). I can use the tanning booth all of the time I want for only $25 US a month. A lot cheaper than a week at the light box.

Later!

Linda


06/07/2010 08:48 AM
elseaeff56

Dear PLC/Pleva patients,

I was told by my derm's nurse that I can get the same results by using a tanning Booth as I can with the light box for so much cheaper.

It was a 45 mile round trip, and I had to pay $20 copay every time I used the light. Now I use a tanning booth (I don't use beds - I don't want to stew in other's juices) and pay only $25 a month to use the tanning center for as much as I want!

Just letting everyone know that there is another choice in treating your PLC.

Regards,

Linda

PS: I found that acrylic nails do not break the skin, so you can scratch till the cows come home without breaking open your papules. I also have my legs waxed regularly because the hair will grow around and into my skin, causing so much more itch.

It's not so bad, after all, when you have a disorder that calls for suntan, acrylic nails and leg waxing! It can't be too bad if I get to do all of that! I'm going to my derm today and have to ask about why I'm losing my hair! Chemo's been over for more than 18 months, so why am I still losing my hair?

Take care,

Linda


06/09/2010 02:28 PM
LeahMariex3
LeahMariex3  
Posts: 475
Group Leader
I'm an Advocate

I just do natural sunlight. Cheaper for me.. I don't have 20 a month, so that works with me. Yeah when I got my nails done, it helped a lot! Wasn't able to itch whatsoever.

08/11/2010 11:24 PM
jrod6
Posts: 2
New Member

I happened to find this group tonight and thought that I would join and share my experience with you all so that hopefully your days of PLEVA can come to an end! I was finally diagnosed at the age of 14. It took forever before I found someone that knew what was wrong and what to do. I was on tetracycline for months, tried laying in the sun several times per week, had baths in special solutions....nothing worked. I was very disappointed and beginning to feel helpless. My condition was finally cleared up after I decided to pursue the UV treatments. I went for several weeks and my spots went away.

I would recommend this treatment to anyone struggling with PLEVA. It is ten years later and my spots have not reappeared. Hope this is helpful. Best of luck to everyone.


08/26/2010 02:53 PM
LeahMariex3
LeahMariex3  
Posts: 475
Group Leader
I'm an Advocate

I have been doing light treatments.. still popping between treatments.
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