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09/27/2009 05:23 PM

Lichen Planus of the eyes

cellmuus
 
Posts: 1
New Member

I was diagnosed with lichen planus of the skin about three years ago. About two years ago I started having problems with red, sore and watery eyes. After seeing many specialists in the Midwest, who couldn't figure out what I had, a doctor at Mayo Clinic thinks I have lichen planus of the eyes. Only twelve cases of it in the world, or so they think. Does anyone else have this, or heard of it? I am currently using protopic twice a day. It helps, but isn't great. I still have skin problems as well, but not too bad right now.
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09/27/2009 06:29 PM
avsgirl19
avsgirl19  
Posts: 161
Member

Cellmuus -

I am so so so sorry that you have LP in your eyes. I have had blisters on my eyelids but never in my eye. I am so sorry. I have taken every drug out there for LP and PLEVA and I'm currently on Plaquenil - I won't know if it's working up for at least another 2 months. I keep a diary/blog if you want opt catch up on what's going on with me and I have a bunch of pictures on my profile page if you want to see them I wish I could give you some advice but I haven't met anyone with LP IN the eye - I'm sorry. I hope our little group helps with all the stress and frustration that comes from having Autoimmune Disease. If you ever want to talk or vent or anything please feel free to contact me - jenlargent@msn.com of 303.241.3288

Stay strong - you are not alone in this!

Best Wishes,

Jen


11/07/2011 05:43 AM
terrismith
Posts: 6
New Member

I think it is now in my eyes also - I have had LP for almost 4 years now and the only thing that MAY keep it somewhat under control for me is brushing with water/baking soda, using the Biotene mouthwash - not the toothpaste, flossing several times a day and avoiding spicy food, caffeine, and alcohol. I am using Clobetasol paste twice daily to sooth my mouth and gums. I also have a deep cleaning at the dentist's 2 to 3 times a year. I have been traveling for the last 5 months and missed my deep cleaning appt., and the flare ups have begun, and I think it is in my eyes now because they are red and burning - drops for dry eyes and redness do not help, and in fact seem to make it worse. It could be allergies because my nose is running and I sneeze a lot in the morning - but I don't think so. I had this happen once before, and it seemed that when my L.P. was under control - so were the "allergies".

I will be home in a week and I have appts. lined up to see what I can do to get this back under some control. It has never really gone away, but I did have a period of about 8 months when I thought it was getting better.


11/17/2011 04:04 PM
terrismith
Posts: 6
New Member

I just went to the dentist and the periodontist. It has been recommended that I get biopsies for Sjorgens. That might make sense since I also have some vaginal discomfort and I have joint pain. I will call tomorrow for an appt. and go from there. I am told that Lichen Planus is often diagnosed when it is actual Sjogerns, and sometimes it can be up to 7 years before it is properly diagnosed. What a roller coaster ride this is.

11/21/2011 11:27 AM
Blackmon5024
 
Posts: 201
Member

cellmuus, hope your eyes are better. how are you doing? what are your eye symptoms? have you found any treatment that helps?

11/21/2011 11:32 AM
Blackmon5024
 
Posts: 201
Member

Hi terrismith. Saw your post on Sjorgens so I opened a forum on that for you. Hopefully people will respond with their experience on the subject. It's a new topic for me. I have no input, but I am interested to hear what you find out.

12/29/2011 07:05 AM
Blackmon5024
 
Posts: 201
Member

IgAEBA65, Thanks so much for sharing. It is painful emotionally to read all of your accounts of doctors and nurses who failed you miserably. I admire your perseverance and your dedication to finding answers. It is true how a sufferer feels when things are not right with diagnoses/treatments, the sufferer knows and yet he would like to believe in the trained specialist who in some outside chance might offer hope. Please continue the valuable work you do with education and research. I am so happy you have survived to be able to help all of us with autoimmune diseases. Continue to post on our website. I see you feel our pain. I believe in the self-informing you practice. I respect the medical profession but I respect even more the experience of a fellow sufferer. We love you. We pray for you. Do you know how one can participate in furthering research? Is there a team of professionals who are on the right track?

12/29/2011 07:50 AM
Blackmon5024
 
Posts: 201
Member

IgAebA65, ever heard of methotrexate for treatment of vlp? I am currently shying away from doctors, but will go to gyno when I collect my nerve. Just wondered if you ever heard of it?

01/11/2012 02:07 PM
Griffen
 
Posts: 9
New Member

Hi

Not sure where to post this but after being on methotrexate now, I saw a new dermatologist who concurred with using it. Still have active VIP, however. Keep mee posted. IgAEBA65, thank you for sharing. I will read your blog and will share with my husband who is now a huge proponent of this blog!


02/08/2013 04:50 PM
sierrasnow
Posts: 3
New Member

Yes, I am on my fourth week of methotrexate for LP. Too soon to notice any change after several years of non-diagnosed LP issues. It is a drug with many applications and I am so hoping it will help stop this lichen planus or at least slow the progress of it. My best to you, Sierra Snow
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