Lichen Planus Support Group

Hi everyone,

I'm a 28 yo female. I've always had fairly severe excema which has been the bane of my life and two and a half years ago I developed LP all over my feet, legs and arms.

This happened about 9 months before my wedding so as you might understand, I was extremely distressed.

After a bit of a fight with my doctor, who was reluctant to give me a high dose of steroids as I've had so many over the years, they gave me oral steroids which got rid of it.

Now a year and a half after my wedding, I've just been to the docs about what I thought was some stubborn excema and he has diagniosed LP again.

I have it on my feet (I also get pomphlyx on the soles of my feet sometimes, which is fun - not) and a bit on my knees and the backs of my hands, little bit on my arms.

I'm terrified that it's going to get as bad as it was before and if I'm entirely honest, this diagnosis has really hit me hard.

Usually I laugh off my skin problem like "oh what has my skin decided to do now" but this time, I'm not laughing and I just can't be positive about it.

I'm sick to death of this. My own skin apparently trying to ruin my life. I'm sick of having this visible mark on me.

The other day I was earing high heels and a skirt and as I walked down the stairs a guy was coming up the other way and he obviously saw my feet and kind of went 'woah'. Idiot.

I know I'm not the only one going through this but I feel so knocked back, so down.

Anyone got any tips on what might help? Anything? Am willing to try whatever it may take!!!

x

Post edited by: LPSufferer, at: 03/15/2010 01:51 PM

I am so sorry you are going through this again. I too have suffered eczema since birth. It began to get worse late 30's then I got LP in 2004. One thing that is not talked about is how much it hurts. I take pain pills constantly just to not burn and/or sting. Hang in there and write here you will feel better I hope.

Welcome our Lichen Planus Support Group.

I'm glad you finally found out what the pain was. LP is an autoimmune disease.

There is no cure but there are treatments, some work, most don't. I think that everyone in this group has tried anything and everything from steroids to banana peels (that was me - it did not work).

I was diagnosed in Aug. 07. It started on my wrists, underarms and inner thighs and is now everywhere. Some body parts get better and then get worse again.

Right now I have blisters and sores on the bottom of my feet and I am miserable.

Walking, standing, any kind of pressure is unbelievably painful.

For me - running water on my skin burns, everything burns. I have tried strong ointments that seem to make it worse. I have been on very high doses of step-down Prednisone and when I got down to 50mg a day it came back with a vengeance and has never gone away.

I took meds that I felt were a last resort medically and that is Immune Suppressant Drug Therapy - which was basically Chemotherapy. The chemo did not work. I also did Phototherapy which made everything worse.

I am now on Plaquenil – another immune suppressant. If the Plaquenil does not work the next step will be 100 times worse than the disease.

Many of us, including myself, have changed out eating habits, only fresh veggies and fruit, no processed food at all, for some that really helps, unfortunately it didn't change anything for me, but I keep trying.

Some people have OLP and none on their skin, others have it on their skin and not orally and some have both. LP really likes to attack our mucus membranes - mouth, nose, eyes and vaginal area. I haven't met anyone with LP in their eyes, but it does happen.

OK - There are so many doctors that have no idea what this is, as you may have experienced. Keep looking for the right doctor. I have seen 7 and only 2 of those knew what LP was, the others left the room to look it up. Most of us feel like we know way more about this than any of our doctors.

There is so little info out there and through this group we have shared stories, treatments, what works and what doesn't. There are MANY theory's. There is research out there that says that steroids will make LP worse and keep it from going away.

On top of the step-down prednisone I took, I have very serious blow back pain and I have had approx.18 Epidural Steroid injections and I believe that that is part of the reason my LP is still trying to destroy me. LP is also a symptom of Lupus and Hepatitis C. Get checked.

I really don't mean to scare you - but I want to tell you the truth. Some of us have diaries that tell our stories and maybe reading them will help. I really hope that your OLP/LP will go away and stay away.

Keep asking questions and get 2nd and 3rd opinions. Ask for more than one biopsy. Keep researching. Stay strong and don't give up. Please feel free to contact me anytime – jenlargent@msn.com . 303.241.3288. We are here for you!

Jen

Group Leader

hi Jen, how are you doing on the Plaquenil so far? I hope it is working for you.

granny1

Hey Granny1

Im doing ok. I think I will have to up my Plaquenil dosage. I see my derm on the 24th. I have been having more and more breakouts so hopefully the change in dosage will help. The side effects of my meds are driving me crazy. I am always nausiated and so tired. I'm hanging in there the best I can. How are you doing?

I got the results back from my biopsies and they confirmed the lichen planus. I just finished 10 days on the Lidex and thankfully I am able to brush my teeth again without it killing me. I hope this lasts awhile. Hope the derm. finds a good solution for you. You have suffered long enough. Take Care.

Hugs,

granny1