Monday, September 13, 2010


Written by Guest: Marilyn Furman

By August of 2009, my Oral Lichen Planus had become so inflamed and partially eroded that I decided I could no longer manage it on my own with just the assortment of topicals I had in my toolkit. The clobetasol and tacrolimus did not seem to be making any difference, and it was time for a more aggressive therapy.

Technically, Lichen Planus in whatever form or wherever located is a “skin,” or dermatological problem. Actually, it is for an Oral Pathologist to deal with, but those specialists are few and far between, and are for the most part located at Medical Schools and teaching hospitals in urban settings. I live on the Gulf Coast of Florida, just south of Tampa Bay. Not considered a big urban area like New York, Boston, Chicago, etc.

I got a referral to a dermatologist with great credentials from Emory U in Atlanta. A young gal with both an M.D. and a Ph.D. I figured she might have seen something akin to my problem while in Atlanta, so I started with her. I’ll call her Derm #1, for the record.

When I presented my problem mouth to her, she immediately identified the OLP for what it was, and got out her textbook to look for possible solutions. She arrived back in the treatment room with several therapies highlighted in yellow marker. That’s when I realized that she had only seen pictures of OLP, and read about OLP, but never laid eyes on a “real” human being with OLP.

The initial suggestion was to try a drug called Soriatane. It actually is a drug for psoriasis, but some people apparently had had luck in treating OLP with it. Before we could begin with this rather serious drug (with significant side effects including some hair loss, no alcohol, etc.), I was referred to a rheumatologist for extensive blood work. I had to be cleared for Hepatitis, and markers for things like Rheumatoid Arthritis and Lupus. The list of things they checked went on for pages and pages. Also had to have a bone density test, because many of the therapies that are used for OLP can interfere with calcium absorption and encourage osteoporosis. So, I passed all tests with flying colors, and began 3 months of daily Soriatane (10mg) drug therapy.

That was in early September of 2009. By early December, there had been no improvement whatsoever in the OLP. If anything, things were worse and more painful. The erosions were still at a minimum on the inside of my left cheek, but around my upper and lower molars things were looking awful and brushing was causing misery, blood and tears. 

Derm #1 agreed that the Soriatane was useless in my case, and she said the tried and true treatment for OLP was Prednisone. I began a daily dose of 40mg of Prednisone around the first of December, stayed at that dose for 3 weeks, then tapered down to 30mg a day for three weeks, then 20mg a day for 3 weeks—you get the picture.

At 40mg a day, I really noticed a wonderful change in the damaged oral tissue. Not only that, the other advantage was that my arthritic knees felt wonderful and I had the energy of a teenager. Prednisone does that, you know. It also has about 100 really detrimental side effects one of which is raising blood sugar.

I have been a Type 1 diabetic for 47 years, since I was 17, and on an insulin pump. Although my general feeling was “wonderful,” I found I was going through a bottle of insulin a week, and still having difficulty keeping my blood sugars below 160. No matter how much insulin I took, I needed more. However, I felt in the short term that it was worth the effort because my mouth was clearing up nicely, and I was able to have some long awaited dental work done in early January, 2010. I dutifully tapered the Prednisone down to 30mg a day for three weeks, then to 20mg a day. By the middle of the 20mg dosage, I noticed the inflammation returning and some small erosions beginning again. The largest erosions had never completely resolved, and now I was getting back to where I started. At 10mg a day, the whole mess was returning quickly.

When I went back to Derm #1, she noted that it looked like Prednisone “rebound,” which we really had not discussed. Derm #1 gave me a prescription for oral Metronidazole, after deciding that another treatment, Methotrexate had little data to suggest a good result. Before filling the prescription for Metronidazole, I researched the drug and found that it is primarily an antibiotic for protozoal and bacterial infections.  Admittedly, I was disappointed in the choice of therapy, couldn’t find much evidence that it worked on OLP, and actually threw away the prescription.

Here’s where mistakes were made:
a) by me deciding that if I had Prednisone “rebound,” then perhaps I should just do nothing and let the “rebound” run its course and I would go back to where I was when I started in September of 2009. Major mistake by me!

b) by Derm #1 in not explaining or perhaps even knowing because of lack of experience, that if you don’t address the “rebound” immediately and effectively, the autoimmune system which the Prednisone had suppressed, would go on a “rebound” rampage. Major mistake by Derm #1.

I chose not to return to Derm #1 because I felt she had no experience with OLP, and getting info from med school textbooks was not enough. I allowed myself to drift for nearly 2 months, and things just got worse and worse until the pain was so severe I couldn’t eat, couldn’t talk and couldn’t sleep. My husband, the dentist, prescribed viscous lidocaine mixed with a bit of Maalox (soothes the burn on oral tissue) as an anesthetic.

I was so miserable and had no idea where to go next until my retinologist  saw how awful I looked at my May, 2010, appointment. He gave me the name of a well-established dermatologist in practice for 30 years. I went to see her, Derm #2, and she immediately identified the “rebound” effect. Her take was to start on a systemic drug called Griseofulvin, which is actually an old drug used as an anti-fungal. A renowned Oral Pathologist at the Mayo Clinic in Rochester, MN, had used this drug in the treatment of OLP, and achieved a decent level of success. Problem with Griseofulvin is that it has the potential to cause liver damage.

I took the drug for about a month with no result, and I was getting concerned about liver damage.  I also was trying to use the clobetasol ointment and tacrolimus as well, but putting those topicals on eroded, open sores was just too painful.

By the end of June, 2010, I was a painful, emotional, psychological wreck with few options…or so I thought.


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