Pityriasis Lichenoides Support Group

I am finding that my Pleva spots are running out of control. They are now breaking out on the top of my feet, on my hands and between my fingers and even one on the palm of my hand.

I can't count the ones on the back of my legs there are so many right now.

Would everyone mind sharing what meds they have tried and if they found something that just slowed it down.

I am hoping you will join MD junction to share with me what has worked for you.

We will all be greatful for anything that can be posted to help us all out.

Thank you.

HI Icantfindaname:

I have had LP and PLEVA for 2 1/2 years now. I have been on every treatment. I tried Steroid ointments, Prednisone, Phototherapy, Chemo, and am now on Plaquenil. Nothing had worked until now - I feel like i'm jinxing it if say the Plaquenil is working but I think it is. The side effects are the same as with chemo - not fun, but if its working I don't care. In between I have tried every holistic treatments out there and none of them worked. I really hope you find something that works for your. Keep us all posted.

Stay strong

Jen

Group Leader

Hi Jen!

I have found nothing that works on my PLC except sunlight! I have MS and every week I must inject interferon and when I do, my PLC goes crazy. You can actually see the PLC break out by the minute and by the time the side effects of the interferon leave, I am so broke out that my legs are purple and the PLC is all over my torso, in my hair, in my ears, on my face, etc.

The only thing that works for me is the tanning center and after my showers I rub lavender baby oil GEL into my skin and blot myself dry as I then rub the oil gel into my body. My skin remains like paper. I've got an emergenct appt with my derm on Tuesday.

Good luck!

Linda

Oh Linda I am so so sorry that you are going through all this. My Step-Dad has MS so I kind of know what you are going through and to have PLC on top of everything else.... I am just so sorry. Are you going to a regular tanning place - or are you doing Phototherapy? You may want to ask your Derm about it. It usually works really well for LP, PLC and PLEVA. I did it for about 1 1/2 months but my derm thinks I may have an allergy to the sun - because I got worse and worse every time I was in the booth - which was 3 times a week. Ask your Derm about it - it may help you. I am currently on Plaquenil and I think I really thought it was starting to work and then this morning I woke up to a new breakout. Hopefully that is just a fluke and it really is working. Not sure if Plaquenil is something you can take - because of the MS but you should ask your Derm.

Again - I'm so sorry you are going through all this - I wish there was something I could do to help. Please feel free to contact me anytime to talk or chat or vent or bitch or anything at all.

You are in my thoughts daily -

Stay strong and remember that we are all here for you.

Smiles,

Jen

Group Leader

jenlargent@msn.com

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

Hi everyone!

Has anyone out there been on Plaquenil? If so what side effects did you have and did it work?

Hi Jen!

I've never been on plaquenil, but I've been on thousands of other things. My PLC is out of control, I think, because I got a mastectomy for Christmas and the chemo and the radiation set it off like there was no tomorrow. It's everywhere now, all over my torso, in my hairline, on my face, in and around my ears, between my fingers and toes as well on my feet and hands. It's really gotten out of hand.

I have been going to the tanning salon, using the stand-up tanning booth for years, and it's worked tremendously. However, I've been sick this year and haven't been able to get out of bed, let alone drive somewhere. How I hate being sick!

I take Avonex injected intra-muscular once a week, and the PLC doesn't like that either, but it tolorated it when I first got it. Then the Avonex left me with horrible side effects, fevers of 103F, aching muscles and joints, even my eyese and hair hurt - all for about 30 hours every week. I personally believe that the disorder really comes out in force when I'm getting the interferon at home and the chemo or radiation at the hospital.

They gave me so much radiation that they burned my teeth so bad that the enamel is gone and my teeth are disolving and peeling down from the top. My dentist says it's nothing that can be replaced, I'll need to get dentures because the radiation also ruined my jaw bone, it's too soft to accept implants so I can have some permanent bridges. It seems to get worse from day to day!

I have a total of 8 doctors I must see every month or so. These doctors send all of their notes about cooperation with me to my GP who keeps an eye on my meds, my doctors and what ever meds they gave me, how I'm being taken care of, etc.

I still believe that the sun is the best healer for this disorder. I go to the tanning booth (where I'm not stewing in someone else's arguments.

I am secondary - remitting MS. That means that when I have an execerbation, most of what I've lost and is showing at the time is just the tip of the iceberg. I got Terry some books on computers and MS certification and hid them somewhere I couldn't find them, I even showed his 86 yo father where I put them so we had two of us to find them come Christmas. Well, our two minds aren't even as good as one. My husband got the books at 4th of July when I cleand the room to be painted. Duh. . My husband heard us and told us to get back to work. No, they told him, his stories aren't as big as he thought they would be! Joke is on him!

He works for DuPont and they have been wonderful, making sure he had all the time he needed to spend with me and the cancer and now they've told him to take as many days off to make sure I get to see my son come home. They are all good guys!

Had the grandkids here overnight and they are so sweet. These two are 3 and 9. I've got two more who are 3 and 1. The 3 year olds are just 8 days apart and the 1 year old has seen his father a total of 3 weeks since he was deployed before he could get to know him.

Well, lots to do, little time to do it. I'm trying to figure out a budget for Terry's new garage and my spirits are more happy than they've been since I quit my job. I loved that job!

And even after he lost all of his worldy goods,

Regards,

Linda

(elseaeff6)

Post edited by: elseaeff56, at: 10/31/2009 05:10 PM

Hi again Linda -

I am so so so sorry that you are going through all this. I need to remember that compared to some I have it very easy and I am very lucky. I wish there was something I could do to help you - but all I can offer is my friendship and prayers.

I hope you have a scary and mummified but pain free Halloween weekend!

Hugs and kisses,

Jen

Thank you for your kind words. I have learned to live my life as best I can. My husband is the best caretaker there can be and my children are wonderful at 33, 28 an 24. They don't laugh at me, they laugh with me. there is such a big difference. My stepmother used to say get up off the floor dummy. My son or husband is there in a moment to make sure I didn't break anything. My stepmother thinks I just called my private disability insurance company and told them I'm sick - send me money. Then when I got SSDI, she said she was going to call them and tell them I'm faking. Believe you me, there is no way to pull the wool over SSDI's eyes.

So, I've got my father, too. the most important people in my live are with me. Too bad my father can't explain it to his wife.

Take care and again, thank you for your kind words of understanding and empathy.

Regards.

Linda

Does Pityrasis Lichenoides cause Arthritis or Canceror both? I'm new to all this

Jennifer no it does not.