It began for me on February 2, 2015. My mouth hurt, Doctor after doctor told me I had thrush. After thousands of dollars spent....I was seen by a Dr. of internal medicine 3 times...8 vials of blood. An ear nose and throat Dr....an immunologist 3 times...8 vials of blood. A Dr. of infectious disease 3 times....4 vials of blood. NO answers. Meanwhile random rashes were appearing all over my body and my mouth continued to get worse. On June 8, 2015, I deciced ON MY OWN to see a dermatologist. I was diagnosed with Lichen Planus and Oral Lichen Planus. A biopsy confirmed it. I was first given a topical steroid to put on all my random rashes. I also had to put it in my mouth on the back of a spoon. 10 minutes a side and on my tongue and gums. My mouth continued to get worse. Next I was given high doses of Prednisone. 60mg. per day for a week....40mg. per day for a week and so on. My mouth continued to get worse. Yesterday I went back to the doctor....4 more vials of blood. She now wants me to take Plaquenil. 200mg. pills twice a day. I have not taken them yet. I am afraid to. The side effects are so scary! I have to get my eyes checked every 6 months. Can someone please help me? I know I am not dying but this disease is chipping away at me day by day
Hi
I to suffer with both it's just so awful itching burning sweating it's good we can chat on here as not many people have even heard of it. My lichens was diagnosed the same time I had abnormal cells after a smear test for which I had colposcopy I do think the two are connected but the doctors don't seem to want to discuss it I am now on antidepressants for this and I find myself constantly looking in my mouth I'm 57.
Have you ever had a problem with smears
Mine actually started with a yeast infection I could not cure on my own. I am 54. I am allergic to all antibiotics so my OB/GYN wanted me tested for diabetes. That test came back good. It's been all down hill since that day. It was when I went to my doctor for the blood work is when I showed her my mouth. My big toenails are ready to fall off. My fingernails are all dented too. I cry every single day as I see no light at the end of the tunnel I feel broken. I feel bad for my husband because there is nothing he can do. I think I am starting to lose my eyelashes. My name is Barb by the way. Thanks so much for responding!!!!
Barb - I'm so sorry you are suffering so much. I've had lichen planus for about 15 years. My dentist first diagnosed it, but didn't know what to do. Finallly, like you, a dermatologist did a biopsy and confirmed it. I have not gone through what you have though. The dermatologist gave me a steroid--clobetasol propionate. I have to really rub it in for a couple of minutes and it relieves the pain. I am now a vegetarian and live dairy-free and gluten-free. Doing this has really helped. And, i'm not starving--I eat all kinds of vegetables, fruits, and nuts (and soy milk). I really do think that nutrition is the answer. I haven't fasted yet, but I think ridding our systems of toxins can help. LP is an autoimmune disease. I wish you well and will keep you in my prayers. Suffering the way you are is very sad.
I was diagnosed a few weeks ago after 2 months of OLP appearing. I immediately started to change my diet to soft food. No spices or alcohol. I went to see a Traditional Chinese Medicine practitioner. She has been giving me acupuncture and herbs twice a week. My mouth is much better already. Am also taking VitaminD and probiotics, all of which help.
I hope this is of some use to you.
I know barb how you feel my toenails are the same and all my hair is very sparse it's so upsetting I am actually in the middle of a divorce if it's not one thing it's another I can't sleep them am tired when I have to go to work have you ever had a problem with smears Xx
Vitamin D3 is the answer for me. I developed OLP back in 2008 just a few months after I retired. Five years and 2 biopsies later, I discovered that at least 4,000 IU of Vitamin D3 with breakfast and again 4,000 IU with dinner keeps all of the sores away. I'm a recovering alcoholic since 1988 so quitting any kind of alcohol was not an issue for me. I DID quit juices and other acidic types of food. I hope Vitamin D3 works for you too, or at least helps somewhat.
Also, I'm an ex-smoker. I quit back in '94 so that wasn't an issue either. I think the OLP is related to our diets and lifestyle. I'm sending positive thoughts your way.
THANK YOU all sooooo much for your comments!!!! As tears roll down my face. I am having such a hard time seeing a "light" at the end of the tunnel. When I first started the Prednisone I did not sleep for more than an hour and a half per night.....I couldn't even drive. Have you all ever taken Plaquenil??? I HATE pills You are all helping me more tha you know!!!! Only a handful of freinds know what I am going through, because NO ONE gets it!!!! They all just think...."well, you're not dying". But I am....inside...everyday
Thank-you <3
OMG....15 years I too shall pray for you!!!
Do you mean Paps Smears? I am so sorry for you too
I will try it!!!!
I smoke 5 or 7 cigarettes a day
I am so sorry you are going through a divorce
Yes I had colposcopy once after an abnormal smear test x
I need all of you !!!! God Bless <3
Bless you too! We know what you're going through. Don't give up. You WILL get through this and be stronger and happier for it. Be your own advocate. We all know what's best for our own bodies.
Thank-you!!!!
I'm Guessing you are from the UK xx