Sunday, September 26, 2010

Is it Stress? Forgetfullness, or overdoing it?

A week of stress, intense focus and needing to scurry about without sufficient rest or sleep can take it's toll.

So many articles on Oral Lichen Planus warn that stresses can "cause" OLP, and I have argued that point repeatedly.

Much of our lives are filled with stress. If it is so that stress causes OLP, they why doesn't everyone have it? I can agree that stress can contribute to a flare up, or contribute to worsening symptoms, but I still cannot accept that stress causes OLP!

That being said, here I am with an annoying flare up. But, let me be clear about this. Not only did I have considerable stress, this week, but I forgot to take my Cellcept several times.

After all, stress makes me a bit distracted and forgetful.

Soon, I realized that my tongue felt swollen, and i had a sore throat sensation in the right side of my mouth. This is where most of my nasty flare ups reside! I grabbed my magnifying mirror and saw that I also had a small angioma on top of my tongue. It comes and goes.

So here I am with raw mouth, getting religious about taking my meds, and admitting the possibility that stress can contribute to flare ups.

Wednesday, September 22, 2010

Seeing Some Improvement

An Update from our guest, Marilyn:

Over the past 2-3 days, I have started to see some improvement in my oral tissue. The more recent ulcerations look like they are beginning to heal a bit, and I have not had any new outbreak of ulcerations for a good while.

Where the ulcerations on the inside of my cheek are healing, they are being replaced by that whitish film that is so indicative of lichen planus, and then sometimes there is an "erosion," not an "ulceration" underneath.

My tongue has been involved more so than before. I have erosions on the top, tip and under on the left side. I find that the "sore" tongue is even more annoying than the inner cheek tissue because the whole tongue muscle is so very painful to move. It makes you not even want to open your mouth for any reason.

Some places along the inner cheek and inside the upper and lower lips are just looking like normal pink oral tissue, and I am so grateful to see that!

I am taking 30mg of prednisone daily along with the Cellcept, and it is obviously the pred that has made the healing process begin. I am going to start to taper down on the pred this next week, maybe on Thursday or Friday, and see if I can still control the healing without the higher dose.

This time, I plan to reduce the prednisone more slowly than before, going down by 2.5mg at a time over weeks and weeks. I think because of the horrible prednisone rebound that caused me to get to this place, I need to taper off over the next 6 months as opposed to 2-3 months. As soon as I see the "rebound" coming back, then I know I need to be on the previous higher dose of pred to control the outbreak. Bad thing is that the pred has so many undesirable side effects that you kind of trade in one problem for potentially another.

The swelling inside my mouth has gone down a bit, however, there is still quite a bit of inflammation, which the prednisone should help. I notice that my need for anesthetic (Viscous Lidocaine) is diminishing slightly.

I have started taking Aleve to control some of the pain systemically. The Aleve works so much better than oxycodone for oral/facial pain. I take it more often than recommended in order to keep the pain cycle from spiking.

I can see that this process will take a while to even remotely become managable, but I feel I may have started climbing out of the deep hole and not descending farther into it. But if it eventually works in conjunction with a reasonably low dose of prednisone, it will have been worth it.

Sunday, September 19, 2010

Blood Test Results

In Thursday's post I mentioned my surprise when viewing recent blood test results. Since then, I've had another set of results come in and they concern me more. While taking Cellcept it is imperative to have frequent blood tests to determine it's affect upon my immune system. My regular doctor has been ordering these blood tests as it is difficult for me to travel to San Francisco all the time to have the blood drawn. Why not have it drawn here? Much easier to keep track this way and actually learn what the results are instead of them getting lost in the big city hospital system.

These newest results show Lymphocytes at half of normal. Basophils two times above normal and Neutrophils somewhat elevated above normal. My liver enzymes are above normal but this is not a result of the Cellcept but from another underlying condition I have.

Lymphocytes are a type of white blood cell that helps the body fight off infections. I knew that by taking Cellcept it would reduce my lymphocytes as a natural part of it's job... to calm down my overactive immune system. I also know that this makes me more susceptible to infections as I mentioned in Thursday's post.

I tell myself the trade-off is worth it. What's a little cold or flu in comparison to chronic erosive oral lichen planus? Huh? I tell myself that every day, every time I take my dosage of Cellcept. But, in the last week or so, I have felt weak and tired, more than usual. A lot like before when I was in a full blown episode of severe lichen planus. I cannot, for the life of me, figure out how opposite ends of the spectrum of the immune system can have the same deleterious effect!

Needless to say, I will be discussing this issue with my primary care physician, who is an oncologist and internal medicine doctor. If anyone could tell me about how a drug can decimate the immune system and what kinds of opportunistic infections could jump in there, she can. I hope it will be a simple matter of having an antibiotic prescription ordered.

Note: Digital Art Photo is of my cat's collar as he moved away from camera.

Thursday, September 16, 2010

Common Sense Forgotten

I've been taking Cellcept for my Erosive Oral Lichen Planus and have had improvement over these twenty months. During this time, I have had repeated blood tests to see how much the Cellcept is affecting my blood. Since it is normally used for transplant patients so that they wont reject the foreign body part, it's to cut down the efficiency of the immune system.

In Erosive Oral Lichen Planus the immune system perceives the tissues of the mouth to be foreign. Like an infection, it is attacked which puts the immune system into hyper drive. Therefore taking Cellcept (Mycophenolate) will help calm the immune system down and stop it from attacking the mouth.

It's common sense that if one is immune compromised like this that one should take certain precautions to avoid unnecessary infections. At first I was extrementy careful and followed the protocol closely. But, as time has gone by, I have been careless.

I just got some blood test results back which shocked me out of my complacency. So, as a reminder to myself and others here are some steps to prevent infections:

    * Stay away from people who are sick, and avoid large crowds of people.

    * Avoid certain kinds of foods that can expose you to bacteria, such as uncooked foods, fresh unwashed fruits and vegetables.

    * Wash your hands often. Keep them away from your nose, mouth, and eyes.

    * Brush and floss your teeth and get regular dental care to reduce the risk of infection in your mouth and throat.

    * Ask your doctor whether you should get a yearly flu shot and the pneumonia vaccine.

It's important to know the signs of infection, such as fever. Call your doctor right away if you think you have an infection.

Wednesday, September 15, 2010

A Quaint History of Lichen Planus

Here is a PDF file of an article written and publshed in 1941 whereby a patients diagnosed with Lichen Planus were treated with Vitamin B complex.

Oh, if only this were the cure!

However, I am placing the link for this article for the sake of historical medical interest for anyone who would like to read it.

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.


Sunday, September 12, 2010

Update from Marilyn - Addition of Prednisone

Hi, this is Marilyn updating:

I started 30mg/day prednisone this past Tuesday, and this morning for the first time I think I am seeing a bit of improvement.

One thing I have noticed is that I have had no "new" outbreaks of erosions for a while. The ones I have are so painful that I forgot to pay attention to the fact that there have been no "new" eroded areas.

I plan on dropping down to 25mg/da of prednisone beginning this coming Tuesday, then waiting 2-3 weeks to go down to 20mg, etc. My NP and I decided I really need a very long tapering off the pred this time in order to let the Cellcept get a good grip. I don't mind being on a low dose of pred as a maintenance if necessary, just to get controlled.

I realize the biggest mistake made was by the dermatologist I was seeing last Spring when I came off the pred completely and the rebound had started. She should have stepped in immediately to address the rebound before it got so out of control and my auto immune system went on such a rampage. I am going to pay the price for that lack of intervention for the rest of my life. 

The past 6 months of chronic erosion(s) has left permanent damage to my left side cheek area, and there is no doubt I will have significant scar tissue. I need some dental work, too...mostly an intense prophylaxis and my perio pockets checked and cleaned out. Fortunately, I've never had periodontal problems, but this last 6 months of very poor dental hygiene may cause some. Hopefully, no decay has started anywhere, either.

I sympathize with Elizabeth on the wisdom teeth. I still have all 4 of mine. They are all in a difficult position to extract, and all of them are deeply embedded in heavy bone. Removing them would be a nightmare for both the oral surgeon and me, not to mention healing and possibly initializing another horrible OLP flare up.

I am concerned about my ability to open my mouth, however. I am assuming that when more of the erosions, swelling and inflammation goes away, I'll be able to at least get my mouth open enough to eat normally. When I try and open to a more normal width right now, I feel pain and "pulling" on that tissue. I know I'll always have to cut most of my food into small pieces, but I don't want to live on soup and ice cream for the rest of my life!

Friday, September 10, 2010

Elizabeth - Follow up Visit to Doctor

Tuesday I went to San Francisco to see Dr. Piri. She checked on my mouth and as I knew, it looks really good with some mild redness in the front sides of my tongue, and a little bit of striation underneath tongue. These areas cause me little or no pain or burning. I just have to be careful if food I eat in a restaurant doesn't have hidden spiciness. So anything that comes with a sauce or gravy, I always ask to have on the side so I can carefully "test" them.

right lateral in back by molar

The only problem area is the same worst place I've had all these years located behind the right bottom back molar. I have only seventeen teeth and am missing all my molars on that bottom side. The only one remaining is my wisdom tooth, which was never pulled. Unfortunately, because it is so far back there it is hard to clean, and difficult to get the Clobetasol into for healing to take place. At one point when things were so swollen and the scar tissue appeared to be over growing my tooth, we talked about having it extracted. At the time, I was in so much pain, and couldn't open my mouth wide enough to toleration having it done, that I never got around to making an appointment. I am glad I didn't have it done. The swollen scar tissue has receded and I am able to use a bent Q-tip to lift some of the yucky stuff that lurks there and at one time caused infection.

 tongue a little swollen with raw patch on left

Part of the problem also, is that the tongue back there is also still sensitive and I think a little swollen as I have a hard time swallowing on that side. Though not erosive at this time, it is still painful but not burning. I've had worse, but I wish it were better. I constantly have the feeling of a sore throat back there and I can feel it from the outside on my neck, under my chine and ear. Sometimes I put a Lidocaine patch there to numb it for relief.

 right lateral showing small blister and vein

My salivary glands are still swollen and rock hard. I don't know if they will ever go down. That area hurts to touch.

I will now be referred to one of the dental clinics through UCSF in order to have some much needed dental work done. Since I have no insurance this will be a slow process where I will probably only be able to get one tooth worked on at a time unless they have some kind of payment program where they bill me and I pay as I can. But, at least I will have some expert care, and can begin to feel more normal. I'd like to save my front teeth as soon as possible, then get a bridge for the upper left side. I think my bite would improve considerably.

top of tongue striations

I asked how would I ever know if there were changes indicating cancer. What would I need to look for. She said you really cant tell in the early stages and that is why she wants me to keep coming back regularly for check ups. I asked what kind of treatment.

Surgery? Yes
Chemo? Yes
Radiation? Yes

Apparently the radiation is the harshest. If I think I have problems with my mouth now, I hope I never need to have radiation as it ruins everything. I don't even want to think about it. But, I am glad I asked. I like to know the facts, even if they might not ever apply to me. Better safe than sorry. I had actually been thinking of finding someone here where I live to go to in case I ever have a bad flare up again. I was thinking I could avoid the long trips to SF. But now I realize it's best I keep going up there. Dr. Piri knows my mouth, and would recognize subtle changes. My own Ear Nose Throat doctor who I see for allergies, often asks to see my Oral Lichen Planus and he always says, "All gone! That's good!" And I know he doesn't really know what to look for unless it's raw, open erosive and completely fulminant. Same with my asthma doctor. Though both are concerned about it, I have had to show them pictures of how bad it got, and explain what's still bothering me.

 under the tongue striations

One wonderful thing that has happened by my keeping these two informed of progress and treatment is that I have learned since I am no longer taking prednisone I can return to having my allergy shots! Apparently Cellcept works on a different part of the immune system than prednisone does.


Note: I took the pictures myself by holding a hand mirror in front of me and looking into the camera. I am thrilled that I have so much more muscle control now. In the past when Dr. Piri was taking pictures my tongue would vibrate because I didn't have muscle control. Plus, I can now open my mouth wider.

Monday, September 6, 2010

OLP HISTORY from Guest Writer, Marilyn


1. Original Diagnosis:  Skin biopsy done 12/02/1997 revealing Lichen Planus

I had skin lesions on my back and torso. They were small, itchy, flat lesions with thin, whitish-gray, filmy coverings. If I  scratched off the coverings, then small, red, bloody sores were beneath.  Initial treatment was Clobetasol Propionate Gel, 0.05%. After about 3 months, the skin lesions disappeared and have not returned.

However, Oral Lichen Planus appeared within weeks of the skin lesions. I had light “lace-like” patches on the left buccal side of the upper and lower gingival tissue. I had no pain at the time, just the lichenoid changes, which my dentist monitored closely. He had diagnosed OLP in the past, and identified it immediately.

The OLP remained quiet and benign for several years. I periodically saw flare-ups of inflammation and had discomfort around some of my back molar area on the upper left especially. But I used the Clobetasol Gel as a topical to treat them.  The dentist continued to monitor the progression at every cleaning appointment, and prescribed Fluocinolone and Triamcinolone topical when I felt the Clobetasol was not working any longer.

By 2004-2005, the inflammation was worse and now was attacking the lower left molars and the buccal mucosa (inner cheek tissue). I also noticed that ulcerations (erosions) were forming at the base of some of those molars, and experienced moderate bleeding when brushing. I found that any toothpaste with sodium lauryl sulfate, mint, or cinnamon made things dreadfully worse. Of course, no alcohol-based mouth rinses were acceptable almost from the beginning of the outbreak.  No matter how gentle I used my toothbrush on the left side, the lichenoid film would be scraped away, and the raw bloody erosion was beneath. I never brushed my teeth without blood. Started going for dental cleanings every 3 months because I knew I could not remove the plaque and calculus effectively by myself. It really had to be done by a professional. Fortunately, my husband is my dentist, so he took a very active role in the diagnosis, follow-up and maintenance of my oral tissues. He has been the only one to work in my mouth for 15 years.

An important note, when I first went to the dental office as a new patient in 1992, the initial comprehensive exam included measuring how wide I could open my mouth. They do this to determine difficulty in working in one’s mouth. In 1992, I could open 46mm. That’s a pretty big mouth! By 2007, when I was measured by an anesthesiologist at the hospital before having a hysterectomy (they need to insert a tube down your throat when under anesthesia), it was determined that my ability to open was so reduced that they had to use a pediatric tube for me! By 2009, when I had a implant done on the lower right to replace a cracked tooth, my ability to open was down to 30mm. All caused from the ongoing swelling and inflammation of OLP on the buccal mucosa. The implant surgeon referred to my left side as a “mess,” and was glad to be working on the right side. He had to work from a horizontal angle to get the  implant in because I could not open wide enough to allow the usual vertical placement. My husband had a similar problem trying to place the restoring porcelain crown on the implant.


Marilyn Furman
Sarasota, FL

Always seek the advice and supervision of a qualified licensed medical professional!

The information provided on this site has been created as an online journal only. The author is writing from her personal viewpoint and cannot guarantee the completeness or accuracy of the information displayed.

Comments to any of the entries are appreciated.