Oral Lichen Planus/ Lichen Planus
Posted , 15 users are following.
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 
2 likes, 68 replies
rajkiwi luchanadonna
Posted
I have not yet gone through the numerous advices fellow LP sufferers have offered you. which I am sure will have sufficiently answered your querries.
Steroids like prednisolone or methyl prednisoloe usually tend to show rapid improvement in the condition. The reduction dose of steroids seems to be a bit too steep in your case. if steroids are rapidly tappered the condition can get worse. A pharmacist (if you are from a country that requires qualified pharmacist to disburse medicines) will infact warn you of the same.
I suggest you follow the advice of the doctor. keep following what others are saying and ask intelligent questions and clarifications from your doctors. The doctors themselves may not know what to do if this is the first case. They refer to medical databases and try out various regimes and eventually become skilled. i prefer to go to a dermatologist who is confident, knowledgeble and experienced. This does not mean the suffering is not there. It just means you feel comforted knowing your doc is going to be empathetic and constantly monitor you till you are better.
donna00713 luchanadonna
Posted
I am new to your board, I have had this for almost 2 years plus lichens sclerosis on the other end .I just finished a prednisone dose pack and my dentist recommended this product with great response. Look at this web site perio science. There phone # 800-915-8110. The product is called hydrating AO Pro Vantage gel $43.00 plus tax. I will start off using 5 doses a day which is the size of a pearl. This is brand new for me. I have nothing to lose and hope that there will no more steroids in my life. I'm hoping that this may be a god send for me and for every person that is having an issue and not finding any good ending to there story. The gentleman that I talked with today when I ordered the product is sending me information on it and I will forward to y'all. I hope that by sending to one of y'all you will read this post. I'll keep everyone posted on my improvement. This may take a little longer since I have to taken prednisone. I hope that this going to help.
linda32054 luchanadonna
Posted
I went to the same specialist that you went to. A primary care doctor, an ENT, a dentist and an oral pathologist. Finally I went to a dermatologist and he diagnosed me with OLP an did a biopsy and it proved I definitely had it. I was put on Mycophenolate and it worked on the lesions in my mouth, but I hated the side effects. Weight gain and hair falling out. He switched me to Plaquenil and I have taken it for four weeks and it works great. Your right, you have to get your eyes checked often as it can affect the macula, but the key word is "might". I suppose their are people who take the drug and have no problems. Just have to decide whats best for you I suppose. I'm willing to take it as I'm just tired of my mouth burning and hurting all the time. I just want to EAT again!
Good Luck.