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lovebug61 (@lovebug61)

Oral lichen Planus

Autoimmune Diseases | Last Active: Sep 10 7:15am | Replies (71)

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@maryz

Dear Lovebug61. I know the pain and frustration that come with OLP after many years. Because we are only 1% of the population it is a rare medical person who has interest in this disease. After 30+ year the severity ebbs and flows. Be sure that you see someone regularly/quarterly who can track your LP. After a particularly bad 6 months I have trays made for my teeth and use clobetazol 5% gel 3times a day until the inflammation and lesions are reduced. This was after Prednisone injections in my cheeks. I take 8000mg total of Tumeric with bioprine divided 3times a day with food. I have been told to eliminate ALL dairy as some patients seem to be allergic to the milk proteins…so I have been very diligent about reading labels. I am not yet sure if the diet change will help the LP but the Exema that I had developed about 3 years ago has disappeared and did so after about 5 days. My greatest success has been when we lived near Medical Schools and I was seen by Dr’s in the Oral Med or Stomotology clinics. They reviewed me quarterly, watched and tested for oral cancer. And tried various protocols etc to help. The pain at night was helped by using Xylimelts w/o mint, by OraCoat, During the day using small amount of Viscous Lidocaine. I also exercise daily to get my heart rate up as I believe that also increases the blood flow in my mouth which helps my healing. I hope some of this helps with your symptoms.

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Replies to "Dear Lovebug61. I know the pain and frustration that come with OLP after many years. Because..."

Good morning Maryz,
I am about 6 months into treatment for OLP and vag lp. You have so much experience I wanted to ask you about symptoms. I am doing clobetazol 4x week and a liquid concoction of an anti-rejection medication. Some days my gums look "fine" and then they're flaming. I have had episodes of thrush. I am really frustrated. Before my diagnosis with biopsy, I had no lesions, no burning tongue-my dentist just seemed concerned that my gums were so red. He suspected lp and sent me to a specialist and my world turned upside down. Did you go through any allergy testing? I have some metal fillings-the specialist said, no that's not the cause, but I am considering having those replaced just in case it might make a difference. I am not satisfied treating the symptoms-I would like to know the cause and address that. what are your thoughts?