Lichen Planus

I saw my Derm today and she thinks that my skin is slowly but surely getting a little better - except for the 1 inch long 1/4 inch deep gash on the bottom of my right heel. I need to justkeep doing what I'm doing and I see her again in 3 months. I still need to take the Plaquenil so I'm really looking forward to being nauseated for another 3 months - NOT. Anyway

As some of you may know - I have been doing much much better. I think that the Plaquenil and antibiotic that I am on are starting work. I have been getting a blister here and there but no big breakouts.....until today. I woke up with a bunch of blisters on the palm of my right hand, my right thigh and all over my right knee. Please keep your fingers crossed that this i

Finally some good news!!!! I saw my derm today and it looks like the Plaquenil and the antibiotic I'm on are actually working!!! YEY YEY YEY YEY!!!!!! I see her again in 2 months. Keep your fingerscrossed for me that I keep getting better :)

It never ends does it? It's always something. Yesterday morning I was on my way to see my pain doctor and I was in a pretty bad car accident. The other guys is fine, thank god - not sure about his car though. My car was so smashed that the Firemen had to cut me out of the car with the "jaws of life". My back was REALLY REALLY hurting. When I got to the hos

I have been on Plaquenil for about 2 months now and I really thought it was staring to work. I haven't had a breakout in quite some time. Yesterday I decided to to tell a few people thatI thought it was really starting work. I think I jinxed it because today I work up with a new breakout on my neck, chest and face. I guess I shouldn't have said anything at all. I see

I read this quote last night and it really spoke to me. In a strange way it explained how I feel about my skin. Hopefully it will do the same for you.

"What an unexpected of fate: Only aftermy skin was scarred did I finally become able to really feel. Only after being born into physical repulsiveness did I come to glimpse the possibilities of the heart: I accepted this atrocious body

I was starting to really feel better and felt that I was finally kicking this flu and this morning it's back!!!! WHY?????? I guess it's not enough for me to not leave my house, now I willhave to quarantine myself and not let anyone into my apartment. But I love it when people come over to visit me. It makes me feel like I still have some sort of life. On Tuesday 3 of my

Today is one of the most beautiful day Denver has had in quite some time and the bottom of my feet are bleeding so I can't got out to enjoy the 85 degree weather - Indian Summer? Nonot really - we might get snow on Wednesday. I love fall weather - but my body does not. When the temp changes drastically like yesterday and today and tomorrow, my back hurts more than I can eve

I am not well. This flu has really kicked my boote'. It's been over 2 weeks and I have a fever again. The side effects of the Plaquenil are not helping - BUT - my knees look SO MUCH BETTER! I hope I'm not jinxing anything by saying that. Last night I was SO ITCHY that I wanted to peel my skin off. Too bad I can't do that - and it's not really stopping. I

Hi all ~

I have been really sick, and still am. I have. I have the N1H1 (piggy) flu. I came down with it about 1 1/2 weeks ago. I am having a really tough time shakingthis thing. Being on immune suppressant drug therapy (ISDT) and piggy flu do not mix. So any of you that are on ISDT, stay far far far away form anyone with a cold or,

I have been on immune suppressant drug therapy for about 4 months now and I have considered myself lucky that I have not gotten sick. The reason why I haven't been sick is because I'm in so muchpain that I never leave my apartment - but last week I did leave my apartment for 2 nights in a row and now I am so sick. My head feels like it has been stuffed into a fishbowl and my chest is

As most of you know, when you have an autoimmune disease like LP or PLEVA you know that the pain can be so bad that you can't do anything. That's what's been going on with me - I haven't done anything in about 2 years. This spring I decided that I was not going to miss the best concert season Denver has had in years. I have missed so many things and I wasn't goin

As you know I had 2 more biopsies done last week and I got the results today and guess what came back????? F***ING INCONCLUSIVE DERMATITIS!!!!! THey have no idea what's going on with me. THe pathologist recommends further biopsies!!!! How many do they need to take???? I am so pissed off. I am so sick and tired of this. It's been over 2 years now and ..... AAAAAAAAAAAGGGGG

Well another day at the derm. They still don't have a definitive diagnosis. I have to be on the Plaquenil for at least 3 months to see if It will work. And if it does, I have to be on it for 6 months to a year. If I have no improvement in 3 months then we will move on to treatments that will have side effects way worse that the disease. YEY! 

More blisters on my hands this morning. AAAGGGHHHHHHH. Can weather have any thing to do with it? When will this end? I can't take this much longer!

Friday morning I woke up with new blisters on both of my hands. New lesions on my arms and legs that are so itchy I may go crazy, and...a scaly ameba looking lesion on the back of my right ear, that goes from the back of my ear to my neck. It is worse today. It keeps getting redder ad bigger. At least I see my doctor on Wednesday. Speaking of my derm...she is at a loss as to wh

Once again the latest biopsies came back inconclusive. My Derm is at a loss - she is going to sit down with the Pathologist and go over ALL of my slides starting from beginning to try to figure out what is going on. I have a feeling that this is it and that I will HAVE TO accept that I will always have breakouts. I wish treatments would actually do something

I saw my derm today. It was 2 1/2 hour appointment. 2 hours was just WAITING!!!!!. Anyway - My Derm had about 20 doctors come in to see me and give their opinion. Talk about being pokedand prodded. They took me off the MTX - (chemo) and put me on Plaquenil. Plaquenil side effects include - loss of appetite, Skin rashes (what?????) Hair loss and loss of vision. My eyes are ba

I'm not getting better. I have an emergency appointment tomorrow with my derm. The bottom of my feet are so bad that I can hardly walk. I have also been watching a breakout attacking my thighs and the top of my feet. It started about 1 hour ago and I must have at least 20-30 new blister/lesions. Will this ever end? I'll update tomorrow when I get home from the derm.

Things are not getting much better. My feet are so bad that I can't walk with out screaming. Layers and layers and layers of skin are missing. They crack open at night. They bleed. Everything I have has blood on it. One of my many nurses suggested that I put a ton of Vaseline on the bottom of my feet and then put WET socks on. I tried this and it just made it worse. I feel

I just finished taking the last of my MTX at the current dose. I woke up with more blisters and open wounds on the bottom of my feet. Now the my Derm will up my MTX dose to the highest I can take. It better fricken work. I can't take this much longer. I WANT MY LIFE BACK!!!!
 

I have been off Phototherapy for about 2 weeks and I'm still getting new blisters and lesions. I hope that being on a higher dose of MTX will start to work soon. I don't know how much more of this I can take. The good news (yes, there is finally some good news) is that last night I slept more than 4 hours for the first time in at least a year. My pain doc put me on a new sleeping

Today is a hard day. MTX makes me so sick. As soon as I get used to this dose they will up the dosage again and...blah blah blah. I finally got some pictures up. Some are from last year and some are fromthis last June. It will give you a glimpse into what my skin looks like these days. My lastest breakout is still "breaking" out. Everyday there are more and more. I watch them come to the

I finally saw my Derm today. She took me off Phototherapy but is continuing the MTX for at least 2 -4 more months. 2 more months at the current dosage and then it will jump to the highest dosein 6-8 weeks. I sure hope this helps. I am so fed up with all this. It would be nice to be under a 7 on the pain scale. They are also trying to work with my pain doctor to change m

They almost doubled my MTX and I'm up to 54 seconds in the "cancer causing booth". In the last 3 days I have had a massive breakout. As of this morning I have over 200 new blisters andlesions.

Hopefully my next message will have better news

I am so sunburned. I am MISERABLE. I'm Taking Chemo. I am MISERABLE! I'm really MISERABLE!!!!

Today I took my first "real" dose of MTX (methotrexate). I hope I wont feel as bad as I did with the "test" dose. But with my luck....

I keep having breakouts - everyday thereis more. It now covers my chest, neck, breasts, ribs, tummy, thighs, legs, under my knees, bottom of my feet, hands, fingers, toes and every day I get more on my face.

The Phototherapy a

I start Methotrexate today. It's Chemo in pill form. Today is my "test" dose. I get blood work done next Wednesday to make sure my Liver, Kidneys and other organs can handle the chemo. If my blood work comes back ok then I start taking the full dose next Saturday. I will take the  chemo pills every Saturday. I will also be taking pretty high

I had my second Phototherapy treatment. I was in the booth 28 seconds this time and I'm quite red from just 28 seconds. I also had a MASS BREAKOUT yesterday - my chest, breasts, ribs, sides and tummy - Will this ever end?

I had my first Phototherapy treatment today. I was in the "cancer causing sun ray booth" for 36 seconds and I'm burned! Places on my body that never see the sun are even worse. Thiswill be a fun 3-6 months. UUUGGHHHHHH

Just a quick update - I start Photo Therapy on Tuesday morning. This will be a long appointment because they have to figure out al the numbers and positions and whatever else they do. All future appointments will only take 50 seconds and build up to 5 minutes and then go back down again.  A 20 minute drive to the hospital, parking, 1 minute appointment, 20 minutes back home. YE

I was diagnosed with PLEVA this morning. I was misdiagnosed in Aug of 2007 with Lichen Planus. I was misdiagnosed. After another six biopsies over the last fewweeks, I finally have what I hope is the correct diagnosis. I hope to talk to you all about PLEVA and what this new diagnosis entails. Going prom LP to PLC/PLEVA is just about too much for me at the

So I had my stitches removed today and I was hoping to get all the biopsy results but... my doctor wants to go over everything again with the derma pathologist. I won't know anything untilnext Wednesday. I am pretty worried about the ameba looking lesion. It keeps growing and I have 2 other ones just like it that are getting bigger everyday. I am so sick of the hurry up and w

I am still so fricken angry!!!!! I have had 6 biopsies in 3 weeks. One is healingquite weel, one has stitches, one is still trying to heal and 3 were done this last Wednesday and are VERYVERY VERY painful. I just want to scream AAAAAGGGGGGGGHHHHHHHHHHHHH. Has this happened to anyone else out there??? I know biopsies are read wrong all time - my Uncle died from a doctor reading a sli

Late last night I got 2 new blisters and did everything to make sure that they didn't break open and went  to the hospital today, showed my Derm and she did a biopsy on eachone. Plus - one of the sores on my left leg started to grow and it doubled in size in 1 week and just looked really scary and 2 more just like it showed up overnight. These things scr

It has taken me about a week to be able to write this - I WAS misdiagnosed. The prelim results of the 1st biopsy taken in August 2007 looked like LP but they NEVER FINISHED READING THE SLIDE! Thank god I didn't have cancer - I would be dead. I am so  angry and pissed and freaked out. They don't know what I have. I have had 3 biopsies

I feel deflated! I have had a name for this....^&*$% pain for 1 1/2 years and now...now they think they were wrong???????????? I think this is my 5th or 6th doctor and I feel like I need at least 20 more opinions!!!!!!! I'm angry. I'm in pain. I get new blisters everyday!!  what are those blisters????huh???????AAAGGGGGHHHHHHHHHHH.

I see the doc again on Wednesday and

OK - Preliminary biopsy results: No cancer and no Lichen Planus. These are just the preliminary results and needs further study.  New biopsy may be needed. I WANT anotherbiopsy because I have a pretty bad breakout around the biopsy sites done on my knee and wrist 2 weeks ago. So.....Once again I am a participant in the "hurry up and wait" game.

I am doing my best to stay sane and I feel a little more calm than I did last week after seeing the doc. As I wrote last week, the doc thinks I have been misdiagnosed. We wont know for sure untilthe biopsy results come back next week. The doc thinks I may have Dyshidrosis. It looks exactly like LP - well, I think it does. The pictures I've seen look just like my skin. However, my skin

So I just saw my Derm at and she now thinks that I have been MISDIAGNOSED!!!! I can't believe it either. She did 2 new biopsies. I will know the results in 2 weeks and will see her again at the end of May. She thinks that the original biopsy was not read correctly!!!! WHAT the &*@#!!!!! I am so pissed off. How can doctors not read a biopsy correctly and tell me I h

I still feel really bad that I have not been writing. I have been really down. The blisters and sores on the bottom of my feet is so fricken painful and is keeping me from walking and standing. Ithought it really couldn't think that this could be any more painful, but I was wrong. Sorry to be so depressing - but at the moment it's all I know how to be. One of the things that make

Hi all ~

I feel guilty for not writing sooner. I have just been going through a lot. Pain pain and more pain. But there is some good news. I have some of the results from the blood work taken a few weeks ago - NO Lupus and NO RA. Yeah! 

I have had more outbreaks. This morning I woke up with a HUGE blister/sore on my head about 3/4 inch into my hairline from my forehea

Well, I got great news today - I finally got more Social Security Disability (SSD) information. I will start getting some $ soon (meaning 2-4 months and that's fast for our federal government) but the better news is that I now - starting today - have MediCare and can finally get some of the more expensive LP treatments. No more crappy ointments or sleep depriving prednisone. Another reaso

So I was finally approved for Social Security. There are 2 types and I have to wait another 2 months to find out what kind I will get and who knows how long it will it will take to get the firstcheck or medical or anything. I'm now going into my 3rd year of fighting for money that I have already made...enough about that.

I had yet another Dr. appt today my 5th 

So Monday morning I woke up and the bottom of my feet (my heals) had blisters and they are now sores and the rest of the skin is peeling off. Walking has been a serious pain. I have to walk on my tiptoes and that is killing my back. I can't really hold on to anything because my hands hurt too much. Today, well now, I'm having another breakout on and under my left bre

For the last few or more months I have read your profiles and talked to many of you and what I'm about to share is not meant to upset anyone in anyway. 

Many of you have said that youhad your first LP breakout as teenagers or young women. I think that my first outbreak happened when I was a teen - but doctors had no idea what it was. Now we are having major outbreaks again. Could

Ok - I'm not sure if the following statement is true or not: I think everyone of us has at some point have tried Steroid, Cortisone and Prednisone to treat our LP. I just found an article aboutLP and I'm very freaked out about what it said. I found it on a "holistic" site that states that the more "cortisone" used, will make the LP that much harder to treat.&nbs

Hi all - I still don't know what the judge in my SSI case has decided. I hope I get the info soon so I can get the medications I need to really fight the LP Monster and kick it's ass!! I'm pretty sure that Ihave mentioned the low back pain issues I have (L-3, 4, 5 - S1) - Wednesday I had my 18^th or 19^th Epidural Steroid Injection - I don't even know how man

So - 1st the good news: Yesterday I had an appointment with a new Derm at the University of Colorado Hospital. I have heard from many people that they have the best Dermatology Department in the country. I spoke with 2 doctors - Dr. Brice and Dr. Francis. They were both very kind and really listened to what I had to say. These 2 women are the first doctors who actually know what LP is and how

I can't believe that is January already! Time really does fly by faster the older I get. I hope you all had a great Holiday! I spent this one alone - just to much pain to go anywhere. I did receivean amazing gift - I was given the money I need to see a new Derm at the University hospital here in Denver. I have been told that they have one of the best Derm departments in the country. I hop

This will be a very short entry -

I have had another miserable outbreak all over my hands. The most painful outbreak that came on a few days ago is in the vaginal area. It hurts so much that Ican barely walk. And - I woke up this morning with most of the skin on my right heal peeled off. Pain Pain Pain Pain Pain. Someone please help!

I have a couple of questions that I hope someone can answer for me. How many men have LP? How many men have Lupus? I only ask because everyone I have come across who has LP are women. How many ofyou have been diagnosed with Lupus? I think that there is a connection between Lupus and LP and all the other somewhat obscure autoimmune diseases out there. There has to be a link somewhere! Has anyo

I know that it is difficult to be Thankful for anything when you have LP. I just wanted to let the members of my LP group, the people who use and visit the MD Junction site and the peoplewho created this site and all of you who read this how Thankful I am for each and everyone of you. With out you, your friendship and support all of this would be unbearable. Because of your encouragem

The last few weeks have been really really hard. On top of excruciating back pain and the LP - I have gotten some sort of infection in my gums between 2 teeth with root canals. The antibioticsare killing me. I have never had any side effects from antibiotic. These make me feel like I have the flu. 2 of my friends who took the same antibiotics had the same reaction. So I am miserable.<

I woke up this morning with new blisters and sores all over my right arm. I am so sick and tired of this. AAAAGGGGGHHHHHHH!!!!

Also, everything tastes really funky, and I mean that in a bad way. Bananas taste like something nasty from...I don't know.  Everything also has a metallic after taste. Chocolate still tastes like chocolate, thank ...whoever. I guess this is a good excuse

Over this last weekend I got more and more new blisters/sores - on my shoulders neck and in my mouth. Just brushing my teeth burns. I can't believe that toothpaste is now one of the most painfullthings I put on my body. It's just not right. Does anyone know of a toothpaste that does not burn??? I have been suffering with LP for over a year and it's just getting worse. I'm gettin

I have pictures for all to see - I tried  to upload them the proper way - but my computer is not cooperating with me at all. I hope that the standard cut & paste will work. I'm showing these picturesto you - so everyone can have a chance to see what this disease looks like. Hopefully, those of you who don't have LP can feel, through these images, how painful it is to have open

The weather here in Denver today is, in my opinion, the Perfect Weather Day. The sky is so blue it's a blue that unless you see it for yourelf, it is hard to explain. The leaves are fallingand it is cold. I love those cold, crisp and breezy days. I would like this one even more if I could go outside and really enjoy it. Today - the LP is so painfull...wearing long sleeves and a sweater

My Story -

I wanted to start this diary to help myself and hopefully help others. The more we talk about LP and all the other obscure autoimmune diseases out there, the more we help each other. Hopefully the more we talk, the more we write, the more we call, the more we fight this disease will be recognized, researched and treated and then cured.

To fully explain how LP has effecte

I really want to tell my story and then continue with daily updates on my progression with LP. However, it won't happen today. The blisters and sores on my bum make it way to painfull for me to SIT at the computer. The blisters and bleeding wounds on my figers make it even more painful to type. But I hope that I'll be able to begin this project soon. I want to try to get

I want so badly to be able to do something, anything about LP. This morning I found a slew of blisters and bumps on my ass. Yep! I guess I'm no longer a sitting couch potato, I have slid to the laying down on my side couch potato. I also developed, overnight, about 30 new blisters on the inside of my left forearm. Now I have the complete "junkie" look.  WHY WHY WHY?

I just wanted to pass along some info that may be useful for you. All lotions and creams burn my skin and make everything worse. I'm sure that happens to you as well. I have finally found a creamthat does not burn. The reason it does not burn is because it has no alcohol in it. It's a little pricey, at least for those of us on a tight budget. Its called Yes To Carrots - BODY BUTTER. The

I have been trying to find a celeb who has LP. If you do find one please let me know. I have written to Oprah, Dr. Oz, Dr. Phil, The Doctors, and pretty much everyone and anyone who may have any cloutwith anyone that could help us get the word out or help us in general. Another thing that has been very very hard for me is not having any insurance. Without insurance I can't get appointments