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Wednesday, July 7, 2010

OLP is Chronic and Uncurable

Since the average age at onset of Oral Lichen Planus is documented to be 55 years, and it affects women more than men, it makes me wonder if male hormones would be helpful to quell the disease. This is entirely speculation on my part.

Of all the treatments I have been given over the years Corticosteroids were the most effective but not enough to keep the OLP at bay unless I continued to take it for long periods of time.

This full PDF article on research done at University of San Francisco is very informative.

Even if you don't live near San Francisco, perhaps sharing the article with your Dentist will give him or her the opportunity to make contact for further information.

Presently, with Cellcept as my main treatment, my mouth looks like this and has minimal pain.

4 comments:

Yohannah McNee said...

I am really grateful you keep this blog. I am 31 and have been struggling with this disease for 4 years. I was diagnosed with erosive olp via two biopsies last year and while it was great to know what this is finally, it causes so much despair knowing that I will probably always suffer from this. It helps to know something is helping you. Also, it's nice to know someone else is as frustrated with "suggestions" as I am. My question is, how do you cope with this day to day? I am so unbelievably depressed and I don't know what to do. I don't know how to get through the rest of my life like this, in so much excruciating pain.

Elizabeth Munroz said...

Thank you. Believe me, I understand about the despair. It's especially hard to be positive and perky when the mouth is flared up. Coping with OLP day to day is challenging. I can only cope one day at a time with constant awareness of how my mouth is doing.

Marilyn said...

Thank you so much for your blog! I have been suffering with OLP for 13years, but now I have prednisone rebound, and I am in agony. My mouth looks like yours did in 2008. I have OLP on the inside of my left cheek, upper and lower gingiva, and tongue. I can't eat, I can't sleep, I can't talk, I can't THINK...I am so consumed with pain. I have been using viscous lidocaine, and tetracaine "lollipops" for anesthetic, but they only last for a few minutes. I have been to 3 dermatologists, and finally found one who felt comfortable putting me on Cellcept. I have only taken it for 5 days, but I am hoping to realize some relief soon. How long did you have to take the Cellcept before you noticed a change for the better? I can feel the new erosions opening in my mouth, and the pain is agonizing. My husband is a dentist, and he had prescribed all the standard "topicals" for me years ago. I know I need a systemic drug to bring this mess under control. So glad to join a group that has an understanding of this misery.

Elizabeth Munroz said...

Marilyn,
The cellcept was given to me in low doses at first and the improvement was minimal, so the dosage was increased and there was a bit more improvement. So in about three and a half months it was almost all cleared up. Like a miracle! I was at 1500 mgs twice a day at that point and have maintained it since then. Still occasionally I will have little flare ups. I also continue to use Clobetasol topically.

I have blood tests every couple months to make sure my white blood cells don't decrease too much. And I try to stay away from anyone who appears sick.



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