Hypertrophic Lichen planus


#1

Hi my name is Gerry and I have had a severe and very thick form of LP for 26 years. I have been to every dermatoligist and Doctor for many years and no one knew what this skin disease was. University of Michigan hospital just diagnosed me less than 1 month ago. I think I have one of the worst cases seen. I have seen many pictures of people with LP and it looks nothing like mine. It covers my entire body and has made it very hard for me to even walk or drive a car. I had foot surgery about 3 years ago and it grew into the incisions so it’s like walking on large rocks on the bottom of my feet. I was just prescribed a wheelchair which I really don’t enjoy using. Sometimes I tell my wife I think I would feel better if my foot just fell off, The pain is excruiating. I can’t forget to mention the itching, unbearable. Does anyone have any remedy to help the itching? I look forward to talking with people that understand my conditon and can relate to LP.

Sincerely,

Gerry


#2

I do not have Lichen Planus but my wife does.

As far as the itching, the only thing that has helped is Prednizone. It does not halt the growth but it does stop the itching. She has to take this in conjunction withCalcium Tablets to preclude Osteoporosis.

She is currently participating in a clinical test sponsored by many major medical schools and hospitals testing Embrel which is used to treat psoriasis. She is in the first month and we do not know if she is on Embrel or a placebo, but I believe she is on Embrel as it seems to be clearing up somewhat.

-------------- Original message --------------
From: gwood004 lplanus-cpt5501@lists.careplace.com


#3

The dermatology department at the University of Michigan invited me to take part in a study involving Enbrel, but I can’t do light therapy in conjuction with the Enbrel injections.


#4

My spouse discontinued her PUVA ultraviolet treatments prior to enrolling in the Embrel trial. Unfortunately, I think her dermatologist had overdone the PUVA as she had blistered badly.

-------------- Original message --------------
From: gwood004 lplanus-cpt5501@lists.careplace.com


#5

How long did your wife use the light treatment? The dermatologist at the University of Michigan says the light treatment will probably shrink the smaller lesions but probably will not help the larger ones. Also, she said the PUVA should alleviate some of my itching. Did the PUVA help your wife’s itching?


#6

i had puva and it didn’t work for me.we are all built differently and our
bodys accept only what they want to. take it from me that one day there will be
a cure but until then we have to live with it and ease the pain. jim from
taunton


#7

Yes , Jimbo you are right. Some people flare up due to stress or an allergic reaction or their symptoms seem to clear up. That is not the case with me. My symptoms seemed to stay at one level until probably the last four or five years. Although, I didn’t have visual symptoms on the bottom of my feet prior to surgery, there was physical discomfort. Now the pain in my feet make walking an unpleasureable chore and the anti-itch prescription given to me basically mimics a sleep aid so I can sleep at night. That medication is Atarax. They say I can take as often as needed, but when I take it during the day I become a living zombie.


#8

The PUVA helped to relieve the itching, however, I think they increased the time too quickly. She started at about 15 seconds the first time and within 4 to 5 weeks they had her over 6 minutes and she blistered badly on her feet and ankles.

I don’t know if the PUVA helped the itching as she was on Prednazone styroid at the same time and that helped with the itching.

-------------- Original message --------------
From: gwood004 lplanus-cpt5501@lists.careplace.com


#9

My dermatologist wants me to go to PUVA treatment for two consecutive weeks from 8 in the morning until 3:30 in the afternoon. I am not sure what the days would consist of, but I know I wouldn’t be spending all that time in a treatment booth.