WARNING!

WARNING! THIS SITE HAS PICTURES AND CONTENT OF A MEDICAL NATURE AND MAY NOT BE SUITABLE FOR EVERYONE. VIEW AT YOUR OWN DISCRETION.

Tuesday, December 2, 2008

Oral Lichen Planus Pictures

A link to some pictures previously posted of my mouth in a flare up.

A reminder that to verify an actual diagnosis of Erosive Oral Lichen Planus one must have a biopsy to prove it. OLP is not curable, but it is treatable. Presently I am off medications and my OLP is returning to look like the pictures. Will be going back on the prednisone, and have an appointment for the discussion of how to begin using the Cellcept to help keep it at a minimum of erosion and pain, since it is an autoimmune disease.
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Wednesday, November 26, 2008

Relapse or Systemic Lichen Planus?

I've been off the prednisone for nearly two weeks now. The symptoms are creeping back at an alarming rate. My mouth flared up the evening after my appointment. I attributed it to the poking and prodding that occurs during examination and photographing my mouth. I told myself it would calm down and be better in a day. It improved slightly, but since then I am having to apply clobetasol every day. Some people get a bit of a rest between flare ups. And I used to in the past. But, at this point it looks like I will not get a rest.

What I wonder is if there is such a thing as systemic Lichen Planus. I have been on steroids since the end of July and had some reasonably good health in general while my mouth was slowly healing. Through those months I was not as aware of the additional symptoms that disappeared as I am now that those symptoms have recurred.

My eyes are all inflamed. There are big black sunken circles under my eyes. I look unwell. I feel unwell. My throat hurts in the back making it difficult to swallow. There is swelling and pain under my right jaw. My allergies and asthma have returned (to be expected when coming off the prednisone). Surprising to me,though, the GERD has returned and bowel problems. My arthritis is flaring up again. Pain is tolerable, but walking is difficult. Fatigue is tremendous.

I was feeling so well for so long, I had almost forgotten what it was like to have this combination of symptoms to balance in my daily life. And here they are again!

I struggled to drive home from a day on the other side of the county. I was so exhausted, all I could do was lie down and stay there, not having the energy to get up for a glass of water for at least an hour. All these things make me wonder if LP is systemic. Or perhaps I have more than one auto-immune disease happening.

So, today I went back on Acidophilus and Aloe Vera to help my innards.

I called the Rheumatologist's office but it being the day before Thanksgiving, of course there was no answer. I left a message. I am supposed to get a prescription from her for Cellcept.

I couldn't call UCSF doctor to report to her what is happening. I will try her on Friday, in case she goes in on that day.

I am returning to low dose prednisone until I can get a chance to talk with either of them.

Tuesday, November 25, 2008

Aloe Vera and Oral Lichen Planus

I came across an news article reporting on some research results which contributes Aloe Vera as being a soothing help to mouth ulcers and Oral Lichen Planus.

Some quotes from the article:

"Aloe vera is an effective treatment for a skin disorder and could be used to treat mouth ulcers, researchers say.

Gels containing extracts from the plant were found to ease the burning, stinging pain and ulcers associated with oral lichen planus, a chronic inflammatory disorder of the mouth.

Affecting more than 1 in 100 people, persistent mouth ulcers due to lichen planus can give rise to cancerous changes within the ulcer, and so need to be monitored by a doctor. "

"A total of 81 per cent of the patients treated with aloe vera had a good response after eight weeks of treatment, while only 4 per cent of placebo patients had a similar response."

"Aloe vera is known to have anti-inflammatory, antibacterial, antiviral and antifungal properties and has been used to treat various skin conditions such as cuts, burns and eczema."

I have Aloe Vera, both in tablet and liquid form. I wonder how the study was done. Were the patients given tablets? Were they given Aloe Vera to swish in their mouth? Or were they given Aloe Vera to drink?

Since I am having a return of gastrointestinal problems I am starting back on the tablets and now that I have seen this article, I will probably swish and drink the liquid and see if it helps reduce the pain.

Monday, November 24, 2008

The Enemy is My "Self"

When I was first diagnosed with Oral Lichen Planus, I didn't understand the part it would play in my life. That was about a dozen years ago. All I had was some white lacy striations on the inside of my cheek. The dentist had noticed it and asked me if I knew it was there. I didn't. He suggested I have my dermatologist look at it. I already had lesions on my arms I had seen her about. I don't think she ever really explained to me that OLP was an auto immune disorder. She ordered prescription and sent me on my way. It was for a tube of triamcinolone, also known as Kenalog. I put it on my inner cheek for a short while, the white striations disappeared and I never looked inside my mouth again to see if it ever came back. It probably did return, but I never had any pain with it, so unless I would have purposely looked, I didn't know.

Step forward in time to when it spread to my tongue. That same dermatologist was taking a pregnancy break from her practice and I was turned over to her partner. I don't believe I ever really understood the relationship that what was going on in my mouth was an auto immune condition. Even though I have gone through several years of flare ups, and worsening of my condition, it hasn't sunk in until recently that my "little problem" was not at all like a viral mouth sore. It' more serious than that. It wasn't until I went up to the University doctors that anyone told me it was incurable.

Lately, I have been reading up on autoimmune disorders, and this is a part of what I understand about them:

An autoimmune disorder is a disease caused by the body producing an incorrect immune response against its own tissues. The immune system loses it's ability to recognize one or more of the body’s normal elements as it's own “self” thus creating autoantibodies, which attack the body's own cells, tissues, and/or organs. This causes inflammation and damage that a normally healthy person would not have.

Healthy antibodies are produced by the body usually in the white blood cells (B cells and T cells) to fight off "foreign invaders" like a flu virus, or a bacterial infection, for example. That's what our immune system is supposed to do. In the case of autoimmune disorders our antibodies get confused as to who the enemy invaders are.

Though there are treatments to keep the disease process controlled, there are no known cures for autoimmune disorders. Very rarely, for unknown reasons, they may disappear on their own. Many people experience flare-ups and temporary remissions in symptoms. Some people will have chronic or a progressive worsening of symptoms. Treatment has to be tailored specifically to the individual, and may change over time as the disease changes or the treatment fails. The goal is to relieve symptoms, minimize tissue damage, and preserve function as best as possible.

I think I still have a lot to learn about my own condition. I have been so focused on the OLP condition and it's symptoms interfering with my health and happiness, I haven't looked seriously at how my whole body is involved in creating this disease.

It is very interesting to me that the treatments recommended for OLP are meant to lower the immunity of the patient, which therefore, may make us more susceptible to other invasive conditions. Colds and flu for example.

Sunday, November 23, 2008

OLP and Cancer

There is an article I have read about Oral Lichen Planus being treated by Aloe Vera, which is often used to soothe skin irritations.

One of the things the article states:

"Persistent mouth ulcers due to lichen planus can, very rarely give rise to cancerous changes within the ulcer, and so need to be monitored by a doctor."

I am glad that my doctor takes my condition seriously enough to have me return regularly so she can check for changes. I know this is one of the reasons why she takes pictures of my mouth. She mentioned this to one of her students. Apparently she has a computer program that can compare photos and help keep track of changes.

My question is, when does a regular OLP mouth ulcer change to a malignant one, and how does one tell the difference just by looking at it?

See: Reference Chart for Visual Inspection of the Oral Cavity to Detect Precancerous Lesions and Invasive Cancers

Of course, the proof would be in having a biopsy, but at what point does one make the decision to have a biopsy?

From what I have read about oral cancers, it occurs with a much higher frequency in those who smoke and drink. So, I suppose my chances of my OLP developing into some kind of oral cancer are lower, since I gave up smoking a long time ago, and my stomach doesn't let me drink anything alcoholic without making me suffer for it. Thank heavens, I love to eat fruits and vegetables (when my mouth let's me), as it seems to be able to give a better chance to not get oral cancer if one partakes of them.

Saturday, November 22, 2008

For Better or Worse?

Now that I have titered down to the lowest dose of Prednisone, I have gone off the pills completely. So, here I am watching and wondering if this will have any significant change in how my mouth will be. Will it get worse again? I hope not. Will it remain the same, or get better on it's own? I hope so.

With autoimmune diseases like this, it is hard to determine when one will be in remission and when flare ups will occur. In my case where the Lichen Planus has gone beyond just being some lacy white designs on the insides of my cheeks to full blown erosions, it becomes more and more tricky to control.

One has to understand how the layers of skin function. When the Lichen Planus gets to the point where the inflammation (auto immunity) erodes the skin, the layers separate and the top layer of skin is actually sloughing off. Just like when a cancer patient has received Chemo, the mucosa sloughs off. The treatment for chemo mouth is palliative. Treat the pain by offering mouth swishes to numb it or coat the rawness until the patient goes off the chemo and the damage can be healed by the normal process that the skin goes through to renew itself.

With Erosive Oral Lichen Planus, the layers of skin keep sloughing off, but do not naturally heal themselves. Treating with numbing medicine, of course, helps the pain, but it does nothing to cure the cause of the problem.

The cause of auto immune diseases are very complex. Why does a person who has spent all their life without an auto immune disease suddenly have an onset of OLP? I had one auto immune disease that showed up when I was about sixteen years old. It was called Alopecia Areata. I lost hair on my scalp in the shape of round circles that got to be about the size of a quarter. Sometimes I would have just one, sometimes a few more. Of course, beauticians as well as doctors would say, it's caused by stress.

Saying a medical condition is caused by stress is ridiculous in my opinion. We have stress of all sorts in our lives every day. Let's say, for example, that driving in traffic is stressful. So, are we saying that driving in traffic causes an auto immune disease? If that were the case then the auto immune disease would never go away as long as the patient was driving. And if the patient actually stayed home and did not drive anywhere, what would then, be the explanation of a flare up of the disease? The fact that the patient is isolated at home? Give me a break!

Friday, November 21, 2008

Pain Tolerance and OLP

I drove up to San Francisco to see the mouth specialist. She took a good look at my mouth and found the same as I noted in my last blog post. It is much cleared up since that terrible episode in July-August. But, it is still worse than the average person's OLP. It surprises her that I have no pain right now. She has a patient who has less erosion than I do who has more pain, for example. I'm sure that people experience pain in different ways. And it is hard to measure the differences. One person may feel a pin prick as a high pain, and another barely notice it. There is no adequate scientific way as far as I know to measure pain. Just asking a patient to reveal on a scale of one to ten how much is their pain is inadequate. The person asking the question has a different idea in his mind than the person responding.

I think pain is a relative thing. I have had a lot of pain in my life from different things, especially from when I had the cancer, that I have a very high pain tolerance and can go about in my daily life experiencing pain levels that would cause another person to be bedridden.

When I think about that, I wonder. It is a dichotomy to me. I can go around in pain and ignore it and get along with it for quite a while, and as long as nothing aggravates it, I can manage. It is not like I want it to be that way, but I find that taking heavy duty drugs for pain makes me feel much worse in other aspects of my life. Quality is hampered and therefore it is a trade off. Live with the pain the best I can rather than try to eradicate it. So, that might explain the high pain threshold idea.

However, when it gets to the point of no return, where suddenly the pain is too noticeable for me, that is when I question the theory of having a high pain threshold. It is almost like a domino effect. I am going along in a slow incline of pain that grows and grows, still tolerating it. Then suddenly it reaches a peak and I can no longer tolerate it, and suddenly I am in intolerable pain, higher than most would wait to complain about.

What triggers the domino effect may simply be bumping into something that affects an area of pain, my hip for example. I might have been going along in life with a high pain level in my hip, but as long as the pain is steady, I can live with it, but the sudden jolt of bumping into something, will send my pain sensors reeling.

This is a problem where the ongoing care of my oral lichen planus. The other LP sores on my body mean little to me. An annoyance. As long as I leave them alone, they are fine and don't bother me. Digging at them opens the door to infection and that just complicates things. My sister has a skin condition where her medication has an antibiotic in it as well as an antifungal, as well as an immune modulator. I think that would work nicely for my regular LP, except for the idea of being over treated for infection. Our bodies have bacteria all over them that need to survive in order for us to be healthy. Killing off all bacteria is not a good idea.

I think what happens with my mouth is that I keep on living with it as it worsens, and working with it, adjusting to it, by changing my diet so that I am not taking foods that would irritate the mucosa. As time goes by it gets so bad that I have finally reached that "pain peak", and suddenly everything is cascading downward, like fallen dominoes. The pain finally takes over and the worsening condition of my mouth needs immediate attention. I really need to be more aware of this, but I find it annoying that I would have to constantly be monitoring and inspecting the condition of my mouth. One of the problems I see I have with this is that each day it might be growing worse in small increments and I wouldn't notice it as much as if it suddenly got worse overnight. Ah, so, maybe it is best to just check once a week and write down what the appearance and symptoms are for comparison, sort of like when women check themselves monthly for mammary lumps.

Being more aware of how much I am changing my diet to suit my mouth might also be a good idea to keep track of. Getting to the point of gently sipping water, not being able to chew, and eating only jello ought to have given me a broad hint that my mouth was in serious condition.

In the past, I had a really good camera that I would use to take pictures of my mouth when it was badly inflamed. But, I don't have that camera anymore. I have another, but I am not able to get the detail as well as I used to. That is why I haven't posted any pictures lately. I think if I take pictures of when my mouth is healthier, then maybe keep track on a regular basis, it would help me to recognize the changes, since just going by how the pain feels is not an adequate way for me to judge my situation.

Thursday, October 30, 2008

PUBMED and how to define words

I found the following Abstract in PUBMED

If you find the abstract interesting you should see the full article.

Please note:
If you find a word you do not understand, go to google and type in Define: word

For example: Define: mucosal
Define: epithelial
Define: antigenicity


Oral lichen planus: clinical presentation and management.



J Can Dent Assoc. 2002 Sep;68(8):494-9.
Edwards PC, Kelsch R.
Department of Dental Medicine,
Long Island Jewish Medical Center,
New Hyde Park, New York 11040, USA.

Oral lichen planus (OLP) is a chronic mucosal condition commonly encountered in clinical dental practice.

Lichen planus is believed to represent an abnormal immune response in which epithelial cells are recognized as foreign, secondary to changes in the antigenicity of the cell surface.

It has various oral manifestations, the reticular form being the most common. The erosive and atrophic forms of OLP are less common, yet are most likely to cause symptoms. Topical corticosteroids constitute the mainstay of treatment for symptomatic lesions of OLP. Recalcitrant lesions can be treated with systemic steroids or other systemic medications. However, there is only weak evidence that these treatments are superior to placebo. Given reports of a slightly greater risk of squamous cell carcinoma developing in areas of erosive OLP, it is important for clinicians to maintain a high index of suspicion for all intraoral lichenoid lesions. Periodic follow-up of all patients with OLP is recommended.

PMID: 12323106

Friday, October 24, 2008

Much Improved

It was seven hours away from home by myself. I really must find someone to keep me company next month when I return!

This is what the doctor said:

Mouth looks very much improved. (she took more pictures to present to her students for comparison to last month's erosions and the month before.) Unbenownst to me I do have a raw lesion on the right side of my tongue. She thought it would hurt, but honestly, I have had so much pain for so long that it really doesn't hurt to my knowledge. That is, until she started poking at it. But, that's to be expected. I don't feel my chronic pain so much until something pokes it, or presses on it.

She wants me to continue on prednisone only and decrease it to 5mg every other day. I need to have another blood test to see if my white cells are returning to normal yet. Then, I will return again in a month.

I think it is pretty good news for a long drawn out, (and pretty scenery) day.

Friday, October 17, 2008

Pimecrolimus AKA Elidel®

I came across an abstract today which I found interesting. The intro says:

"Erosive oral lichen planus (EOLP) is a T-cell mediated inflammatory disease leading to severe pain and impairment. As current therapies are of limited efficacy, application of calcineurin inhibitors is considered to be a potential option.

Objective: To investigate the efficacy of pimecrolimus cream 1% (Elidel®) compared with vehicle cream in the treatment of EOLP"

This is my understanding of the abstract. Essentially, this is a study where they took EOLP patients, divided them in half, gave one group the Elidel cream, and the other group a placebo for 30 days. The result was that seven out of ten patients who used the Elidel for 30 days had improvement. ("erosions cleared completely") They were followed up another 30 days later and they continued to be in the same condition, except for the three who didn't respond at first. Those three continued the Elidel and then had improvement

I found this next part really fascinating:

"Following termination of the therapy, sustained remission of EOLP was detected in 83% of patients demonstrating long-lasting effects of pimecrolimus treatment."

This is the name of the study, the authors and publication:

Pimecrolimus cream 1% in erosive oral lichen planus— a prospective randomized double-blind vehicle-controlled study

Authors:
Volz, T.; Caroli, U.; Lüdtke, H.1; Bräutigam, M.2; Kohler-Späth, H.; Röcken, M.; Biedermann, T.

Source:
British Journal of Dermatology,
Volume 159, Number 4,
October 2008 , pp. 936-941(6)

Wednesday, October 8, 2008

Comparing Oral Lichen Planus Studies

I recently read an abstract of an article: Oral Lichen Planus in Relation to Transaminase Levels and Hepatitis C Virus. The researchers, Doctors Suresh and Ali had 40 OLP patients and compared them to 40 people who did not have the diagnosis. Among them, they learned that OLP patients had a higher percentage of diabetes and SGOT/SGPT levels. (also known as AST/ALT) But, they found none with HCV.

I found their conclusions interesting. However, I feel they didn't have a large enough cohort. I found an article published in 1998 where there were 263 OLP patients in the study and there were a higher percentage of those with HCV as opposed to the control group (people without OLP).

I have been tested and don't have diabetes, but do have an elevated alkaline phosphatase, and it has been that way a long time. I do not have Hepatitis C, either.

I will be returning to my local doctor next week to learn the results of my latest blood tests.

Sunday, October 5, 2008

Recovering

I went to my family doctor in order to ask her to order the blood tests that the UCSF doctors wanted for comparison to previous tests. It's easier if they are done down here at home rather than my traveling 80 miles to get it done by requisition.

I am so glad my doctors are willing to work together. My primary orders my prescriptions. Definitely, I would not want to try to get a refill on an RX by having to drive all the way to SF just to find out they didn't put it through my insurance correctly!!!

Anyhow, I have the requisition for my blood tests in my purse right now. I just couldn't get out of the doctor's office early enough. I Was "wasted" on Friday, so I need to wait til Monday. It's just for a simple CBC with differential (my lymphocytes were below normal last time, and I had no monocytes) and a liver panel to see where the alkaline phosphatase is... last time pretty high. So, it will be probably the end of the week before I can have my results.

I don't feel as lousy as I did last week, so I am willing to bet the numbers have improved.

I am getting good deep rest and tons of dreams, mostly pleasant, for a change.

My SF doctor wants me to recover first before considering another drug. Right now, I just need to maintain low dose prednisone. If things get worse, I might need to increase the dose. I LOVE and hate Prednisone. I love how wonderful and energetic it makes me feel, but hate the other side effects, and worry about the long term, too.

Tuesday, September 30, 2008

TPMT Blood Test

The blood test for TPMT is also known as Thiopurine s-methyltransferase. It's a liver enzyme important to the metabolism of azathioprine (Imuran), and 6-mercaptopurine (6-MP).

Each person’s ability to metabolize thiopurines through the liver is different. I've read that it is only known to affect caucasians. The majority have no problem processing Imuran. However, a very small percentage have almost no ability to do so. One article says, "with 0.3–0.6% having very low (negligible) activity and approximately 10% having decreased activity compared with the remaining population.

Apparently, I fall into the 10% category, as my test results were
called Intermediate. I am so GLAD I was tested even though the chances were minimal.

The test is ordered when patients are about to start treatment or if the patient is having side effects due to TPMT deficiency. The test identifies those at risk of developing severe side effects such as lowering of blood cell counts.

If regular dosages are ordered, a major deficiency of TPMT can usually cause life-threatening bone marrow depression (myelosuppression) This happens because the drug builds up a toxicity in the body due to the lack of metabolization.

When a patient has no TPMT enzyme, then the prescription will have to be changed to something else.

When a patient has a low blood TPMT activity the risk of less serious side effects are more likely just hair loss, stomach pain, diarrhea and inflammation of the pancreas.

If a patient has normal blood TPMT activity then then they can take a standard dose of a thiopurine drug.

When at the lab, I didn't understand why the technician said it was a Prometheus test. But, take a look at this site and you can learn about it.

I am slowly reading through what I can about TPMT and it is scary to realize how close a call this Imuran could have caused. But, seems I am being looked after, as I am still here.

Monday, September 29, 2008

Good News... Bad News....

I have been taking this immune modulator drug, Imuran, for a month now and my OLP is much improved, very much improved!

Unfortunately, I have been getting more flu-like symptoms recently and got to the point that every night after taking my pill, I got no sleep because of severe nausea, and I don't mean an upset stomach, I mean the kind where you wish you weren't face to face with the "throne".

I thought, well, perhaps it was just something I ate, but as it continued to worsen, I stopped taking the Imuran and had a good night's sleep. Take the pill again, no sleep. Stop taking pill... sleep. Doesn't take a genius to figure out it's the Imuran. Called my doctor in San Francisco today and told her what was going on. I just saw her on Friday. She told me to stop taking the Imuran, not just temporarily but permanently.

Blood tests reveal that I have a rare condition which is definitely NOT good for patients who take Imuran, in fact it could result in death according to some of the medical articles I have been reading. Yikes. Glad I had the test! Glad we have the results! I do wish we had the results before this! But, that's my fault. I had the orders, just didn't go to the lab to be tested right away. Live and Learn.

The test? It's called a TMPT. Now I gotta go research this more than I did the first time.

So, now I shall rest up, get some electrolytes down me and get well and start all over again with whatever is next to come along.

Monday, September 22, 2008

Tight Rope Performance

The meds, the combination of my meds, I should say, are a little difficult to keep up with. I've had some noticeable, annoying arrythmias (heart palpitations) since the end of July. I kept thinking that maybe it was due to the prednisone, and figured it will stop as I go off of it. But, the dosages is now down to 5mg. Last week I had some really intense ongoing palpitations (or whatever they are), that lasted a long time. It was exhausting!

So my doctor sent me to a cardiologist for a work up. I also kept wondering if it was caused by anxiety. But, I noticed that taking tranquilizers had little effect. At the Cardiologist's office an EKG was done. Funny, I forgot to even ask what the results were! I should have taken someone with me! Now I have to wait until the follow up appointment to learn what is going on. Couldn't be too serious, or they would not have let me go home.

I have an ultrasound scheduled this week. A heart monitoring device sort of like a Holter Monitor was ordered for me. I wear it on my chest and it measures the way my heart beats. Apparently, the information is sent to some main computer where it is analyzed and a report is sent to the doctor. I have to wear it for two weeks, unless I have an episode that gets them worried. I don't think it is that bad, but I would very much like to have some way for it to stop bothering me. I'm sure many would describe it as having a bird in a cage flapping to get out. Well, I describe it as a monkey shaking the cage door and throwing himself up against it, too. Then, too, the monkey will just sit there tapping his finger in an irradict out of synch way. Tip, Tap, Tappity, Tippity, Tappity, TAP TAP TAP!!!

The cardiologist, though, was more concerned, it seemed, for my liver. The Imuran is metabolized by the liver, as so many other drugs are, but right now I have a bit too many all at once. And my Alkaline Phosphatase is above normal. So, I have spent the last several days researching each medicine I am taking, to learn how they metabolize. Most of them are through the liver. So, I am trying to figure out what other medications I might be able to substitute. For example, there were some prescription eyedrops I was taking which are most definitely contraindicated. So I have stopped them. Happened to see my eye doctor today for my annual exam (how convenient) and he agreed that I must discontinue them. I hope it will stop eye pain that I have had recently.

I have discussed all this with my pharmacist and she is quite helpful to figuring out what other drugs will possibly substitute for the ones that increase my liver counts. I have appointment soon with my primary care doctor, and I intend to see what she suggests. She knows a lot about chemo drugs as she is an oncologist, so hopefully this will resolve the issue.

In the meantime, I have also done some research to learn what nutritional supplements will be helpful also. The one I had taken for years, (Milk Thistle) I had been out of for some time, and careless about replacing. I guess I should not have let it go, because that is the number one, most important one to take to detoxify the liver according to those who research such things.

There are certain foods I will be including more in my diet and some I will eat less of, and some I will forsake entirely.

My white blood cells have dropped below normal. I didn't realize all this would happen so fast. My lymphocytes are the lowest. I haven't had time or opportunity to do much research in this category. I wonder if I were to take a prescription to increase my white blood cells, it would increase my immunity. If so, then I am defeating the purpose of taking the Imuran. And I do not want to suffer any more Oral Lichen Planus if I can prevent it!

Life's a balancing act, and I'm performing with two trays of prescription meds, an electronic heart monitor and a bum leg!

Friday, September 12, 2008

Burning Mouth Syndrome

Today Lady Teelah (great name!) wrote a comment regarding my post on Prednisone Psychosis.

See her comment here.

She mentioned her own autoimmune disease as well as concerns for burning mouth. I hadn't heard of that before so I googled it and found some articles. One produced by Mayo Clinic had a list of causes for Burning Mouth Syndrome which I am including here. Many of these surprise me.

* Dry mouth (xerostomia), which can be caused by various medications or health problems.

* Other oral conditions, such as oral yeast infection (thrush), oral lichen planus and geographic tongue.

* Psychological factors, such as anxiety, depression or excessive health worries.

* Nutritional deficiencies, such as lack of iron, zinc, folate (vitamin B-9), thiamin (vitamin B-1), riboflavin (vitamin B-2), pyridoxine (vitamin B-6) and cobalamin (vitamin B-12).

* Dentures. Dentures can place stress on some of the muscles and tissues of your mouth, causing mouth pain. The materials used in dentures also can irritate the tissues in your mouth.

* Nerve damage to nerves that control taste and pain in the tongue.

* Allergies or reactions to foods, food flavorings, other food additives, fragrances, dyes or other substances.

* Reflux of stomach acid (gastroesophageal reflux disease) that enters your mouth from your upper gastrointestinal tract.

* Certain medications, particularly high blood pressure medications called angiotensin-converting enzyme (ACE) inhibitors.

* Oral habits, such as tongue thrusting and teeth grinding (bruxism).

* Endocrine disorders, such as diabetes and underactive thyroid (hypothyroidism).

* Hormonal imbalances, such as those associated with menopause.

* Excessive mouth irritation, which may result from overbrushing of your tongue, overuse of mouthwashes or having too many acidic drinks.

Monday, September 1, 2008

My Only Hope?

I've been on the immune modulator drug, Imuran, for about ten days now. Some call it a Chemo drug. Apparently, it is sometimes used in cases of Leukemia. My primary care doctor (an oncologist) wrote a prescription for the Imuran at the recommendation of the mouth specialist at UCSF. My erosive oral lichen planus is now "intractable", I think that was the word used. Therefor this drastic measure. I could be on this drug for up to 8 months, if it works correctly. Apparently it has been quite successful for others with OLP. In the meantime, I will continue on the Prednisone, titering down to lower and lower doses.

My mouth is already getting better, the gashes on the sides of the tongue are healed. What a blessing! That's about it for right now. Still a lot else is going on.

The effects of the Prednisone, racing heart, sleeplessness, feeling crazy, are lessening as the prednisone is being titered down. So, I'm feeling better in that category. On the other hand the bone and arthritis pain is coming back. The swelling around the benign bone tumors near my right knee on the tibia and femur has started back up again. I won't be able to have the surgery that my local orthopedic doctor wants to do. I have to be off the Imuran. It lowers the immunity and makes one susceptible to all kinds of things. Not a good time to do surgeries. The Ortho Doc talked about removing the tumors and fixing the torn meniscus.

Imuran is also known as Azathioprine. From what I understand, it's normally used to prevent rejection of transplanted organs, autoimmune conditions like, Colitis and Chronn's disease, and for cases of severe arthritis that do not respond to other therapies. And in my case, the erosive OLP.

I've been told that possible side effects are nausea/vomiting, loss of appetite or diarrhea. I have not had any of these, so far, unless you want to count the lack of ravenous appetite that the prednisone was causing. Okay, so that is "loss of appetite". Isn't it?

Imuran can be very nasty. Apparently in very very rare circumstances (the percentages are very low) it can cause Leukopenia and Lymphoma, among other kinds of "neoplasias".

So the Risk/Benefit ratio is a high one. Either I suffer from a mouth that a dragon has fired into, and all the flu-like symptoms that come with it, and the arthritis bone pain all the time. Or I can have the side effects of the Imuran and Prednisone for the next 8 months.

I'm really feeling quite desperate. To quote Princess Leia Organa, "Help me, Obi-Wan Kenobi, you're my only hope!"

Friday, August 29, 2008

Excellent Article

Though this article was published in 2001, it is quite well written and explanatory of Oral Lichen Planus, comparing a number of patients over a period of years, and defining three degrees of OLP, which I would call, mild, intermediate and severe. Though they didn't use those terms. The article is called Oral lichen planus: Patient profile, disease progression and treatment responses

One thing surprised me in that OLP was referred to as a common condition. I had no idea. I guess everyone else who has it is close mouthed about it. (Pun intended.) I have a tendency to tell everyone, and anyone who will listen whatever the heck is going on with me, whether it is big old rotten gashes on the sides of my tongue, underneath and on top, or even the latest on my 19 year old cat. I have a very open Johari window Sometimes I wish it would close a bit. I'm sure some people don't want too much information!

Found another excellent article published in 2000, called The Bullous Desquamative Lesions of Oral Mucosa.

Monday, August 18, 2008

OLP Stress and Cortisol

Erosive oral lichen planus and salivary cortisol


I have excerpted portions of the abstract:

Patients with oral lichen planus (OLP) often relate the onset and aggravation of oral symptoms to increased levels of stress.

Under normal conditions, stress induces increased cortisol secretion that counteracts inflammatory reactions. The objective of the present study was to assess whether patients with OLP have an impaired capacity to elevate their cortisol concentrations as a response to stress. .....

......The OLP patients did not present with different stress scores when a psychometric test (MACL) was used. No statistically significant correlation between cortisol concentration and stress level was observed. Thus, no support for an impaired capacity of OLP patients to suppress an immune response through cortisol induction in conjunction with experimental stress was revealed.


Accepted for publication July 25, 2000

DIGITAL OBJECT IDENTIFIER (DOI)
10.1034/j.1600-0714.2001.300501.x

Friday, August 15, 2008


The other day while talking with the doctor about the return of symptoms after titering down to 40 mg of Prednisone, she asked if it could be candida or thrush. I didn't think so, because I had already had a ten day dosing of Diflucan along with the days I was taking 60 mg of Prednisone. When people are taking steroids it can lower a person's resistance to whatever fungoids that our bodies carry naturally. They don't ususally present problems if we are healthy, but if we are immune compromised then the fungal conditions can proliferate.

So, on the thought of fungal infections, I did a little visited Pubmed today. In the search engine I put, oropharyngeal AND candidiasis. Which brought up 739 returns. Um... Maybe if I have time... like a day when I am really, really sick in bed with my laptop and my brain still works, I will peruse them all.

One abstract in particular caught my eye, and there was a free article on it. The concept of it was how well does one rinse out their mouth after using an asthma spray/inhaler. This is important because those inhalers contain steroids, which as I mentioned above can cause fungoids to proliferate.

The article is entitled: Kinetic Analysis of Effects of Mouth Washing on Removal of Residues Following Inhalagion of Fluticasone Propionate Dry Powder

Since I also have asthma, I found this very interesting. I really probably am not one of those who rinse well after using my asthma medicine, and so have caused some of my own miseries sometimes. From now on I am going to be more careful!

For information on Mouth Thrush there is a much more layman friendly reading located here.

Saturday, August 9, 2008

Prednisone Psychosis

Oh No!
Current mood: spiritually bereft for unknown reason

"Oh, No!" She cried in the midst of her dream.

Oh No! awakened her, without the memory of why the foreboding and despondency was coming through her in waves like nausea.

The mirror told it all. The dark circles. The sleep tangled hair. The frown frozen on her face. The dried salt rimming her eyes. Telltale signs. Had it been a long dream. It had been bad.

What was it? Seeming to be her mother? Looking back against time? Regretting and understanding the missed opportunities for cherishing the joy? Instead dying into the darkness? Perhaps.

The awakening to the sense of the glass is half full. Half full with a cesspool of dark liquid threatening to suck her into the burning acid of heartache. It tortures her soul. She clings to the side of the glass. The fragile glass, like herself, ready to crack under the weight of pressure.

The cup of tea, the piece of toast, the swallowing of pills. Nothing to detract from the sensations of the dream still enveloping her.

Hang on! Hang on! It will go away!

Wash a dish. Feed the cat. Pacing back and forth. Clean a cupboard. Keep distracted. It is like a persistent oily, ugly debt collector his foot well placed in the door. Hold him back! But, he has gained and now inside at the shoulder, leaning his face too close, breathing stale air.

No escape! A banana. Turn on the TV. Make some pudding. Clean off the counter. Put a banana in the pudding. Add some walnuts. Yes. Food will put it off. It used to do that so well. Like an alcoholic with the relief of a drink. But, no. Food doesn't do it anymore.

Throat squeezing. The eyes burn, forehead crinkled in pain. The cheeks begging for release of tears. The prayers ask for comfort. But, it does not work. So, it is another bad ride. Especially bad ride this time.

B Cells Can Act Alone In Autoimmune Disease

B Cells Can Act Alone In Autoimmune Disease

ScienceDaily (Aug. 8, 2008) — B cells, the source of damaging autoantibodies, have long been thought to depend upon T cells for their activation and were not considered important in the initiation of autoimmune diseases like lupus or rheumatoid arthritis.

In the Aug. 7 online issue of the journal of Immunity, Yale University researchers turn this paradigm on its head by showing that in systemic autoimmune diseases B cells can be activated the absence of T cells.

The study suggests new ways to intervene in the immune system's chronic attacks on the body's own tissue.

The findings were surprising because many scientists believed that B cells remain quiet in autoimmune diseases unless they are stimulated first by T cells, said Mark Shlomchik, MD, professor of laboratory medicine and immunobiology at the Yale School of Medicine and senior author of the study.

"It became a chicken or egg problem. If cooperation between T and B cells is needed to create an autoimmune disease, who falls off the fence first, and why?'' Shlomchik said.

Recently this same Yale group along with collaborators at Boston University discovered an unexpected role in autoimmunity of Toll-like receptors, previously thought to be stimulated by molecules expressed on microbial pathogens. Shlomchik and his colleagues showed that they can also recognize and react to "self" molecules, in particular mammalian DNA and RNA. When this occurs, these receptors help activate B cells that make the classical autoantibodies of lupus.

The new Yale study now shows that these signals substitute for T cells in starting the autoimmune process in B cells. The researchers propose that once B cells are activated via Toll-like receptors, they can subsequently recruit T cells and that this can lead to a "vicious cycle" of chronic autoimmune disease in which the two types of cell activate each other.

The findings might explain why treatments that target T cells in autoimmune diseases have fared relatively poorly, while newer treatments aimed at B cells have shown great promise, he said.

The current study is a direct outgrowth of groundbreaking work conducted at Yale over the last 15 years that showed that elements of the innate, or non-specific immune system such as Toll-like receptors, needed to be triggered before more sophisticated adaptive immune system of humans and other animals could hone in on specific pathogens.

Other authors on the paper are Robin A. Herlands, Sean R. Christensen, Rebecca A. Sweet and Uri Hershberg.
The research was funded by the NIH Institutes of Arthritis and Musculoskeletal and Skin Diseases and of Allergy and Infectious Diseases.


Adapted from materials provided by Yale University, via EurekAlert!, a service of AAAS.
Yale University (2008, August 8). B Cells Can Act Alone In Autoimmune Disease. ScienceDaily. Retrieved August 9, 2008, from http://www.sciencedaily.com­ /releases/2008/08/080807130826.htm

Wednesday, July 30, 2008

Back on Steroids Day 4

Had my kidney ultrasound today. I didn't think it would hurt, but it did. I must be sore inside. Anyhow, should have the results in a few days. Can't be too serious, or I'd be at the emergency room. Got meds. (Got Milk?)

Anyhow, I am back on steroids now (fourth day at 60 mg) and feeling much better, especially my mouth.

Saturday, July 26, 2008

So, I spent most of today in bed. Been using the clobetasol with insufficient effect. My mouth is so bad, I cannot speak. Well, I can speak but it hurts like hell to enunciate. One phone call I was able to handle. But, when I had two other calls, my callers repeatedly couldn't hear or understand me. Finally, decided to go back on the prednisone. Started with 40 mg. because it was already after noon when I made the decision and I wanted to be able to sleep.

So sick all day. Every time I got up, I broke into a sweat. I hate when that happens. I can't work around it, can't distract myself by doing other things. Just got to lay there.

Don't know if I made the right decision, but am desperate. I just started some other new medication yesterday. I had been having intermittent right lower quadrant pain for about 6 weeks. I kept putting the symptoms to the kink in my ureter where it tucks underneath the bladder because of previous surgeries. It had gotten worse and the uptake is that I got to see the urologist on Friday. I have blood in my urine. He thinks perhaps I'm passing stones. (I thought that was supposed to be excruciating?) He gave me RX for antibiotic and Flomax, which is I thought was supposed to be for men only. But apparently it relaxes the ureter and allows stones to pass.

Unfortunately, this evening the Flomax seems to be doing it's job. Kats is here with me (in the shower at the moment). At one point I was in pretty bad shape. I shouldn't have gotten out of bed to watch Hellboy, which we rented from Netflix. So, when it was over and heading back into the bedroom, when a really hard spasm hit. After that we discussed possibility of ER. He worries the neighbors will hear my cry out and think he is hurting me, he says. Have been just laying here chilling out, breathing, calming myself and felt the episode had passed. But as I am writing, I had another spasm. If I can make it another couple of inches it will be out of the bladder soon. I'd rather not go to the ER.

One good thing... my mind is definitely off the mouth!

Friday, July 25, 2008

Ain't one, tis other

I know that dealing with pain always throws me out into the mullygrubs, so then it becomes the quest for appropriate pain control. And that can be touchy mixing certain meds for me. It's either tylenol or dilaudid. All the pain killers in between tweak my brain into migraines or nausea. So, I do a lot of other things for the pain control issues.

I am calling the mouth doctor tomorrow. She gave me her cell number. The OLP has gotten so terrible overnight, I just cant hang on any longer, Time for the prednisone again. and that stuff always makes my depression go away.

So today a visit to the urologist for infection. New guy as my guy was out of town. He was fascinated my the internal hemi and my halfway upside down bladder, etc. So, I'm scheduled for an US to determine if there are stones passing. Now have antibiotics on board. If it aint one thing, it's another

Thursday, July 24, 2008

Esophageal Oral Lichen Planus

Annular lichen planus involving the esophagus: a rare diagnosis.

Cameo

International Journal of Dermatology. 43(5):373-374, May 2004.
Belloul, Lamia MD; Akhdari, Nadia MD; Hassar, Imane MD; Lakhdar, Hakima MD

Abstract:
A 49-year-old woman presented with a 2-year history of a sore mouth, annular, atrophic patches, and chronic ulcerative vulvovaginitis. For 6 years, she had suffered from dysphagia to solids which was increasing in severity. There was no past history of heartburn or other symptoms of esophageal reflux.

Mucocutaneous examination showed white erosive patches on the buccal mucosa, cicatricial alopecia, dystrophic nails, and annular atrophic pigmented plaques localized on the trunk ( Fig. 1). Genital examination showed atrophic and sclerotic vulvovaginal lesions with synechia. Cutaneous biopsy showed an atrophic epidermis, a dense lymphocytic infiltrate in the upper dermis with degeneration of the basal epithelium, and Civatte bodies. Serologic tests for hepatitis B and C were negative. A diagnosis of cutaneous annular lichen planus with nail, scalp, oral, and genital involvement was made.

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The evaluation of cutaneous, genital, scalp, nail, esophageal, and ocular involvement in patients with oral lichen planus.

Oral Medicine

Oral Surgery, Oral Medicine, Oral Pathology, Oral Radiology, & Endodontics. 88(4):431-436, October 1999.
Eisen, Drore MD, DDS a

Abstract:
Objective. Lichen planus, in its classical presentation, involves the oral cavity and skin. This study evaluated patients with oral lichen planus for extraoral manifestations of the disease.

Study design. A total of 584 patients with oral lichen planus were evaluated for cutaneous, genital, scalp, nail, esophageal, and ocular lichen planus.

Results. Extraoral manifestations included cutaneous lichen planus in 93 patients, genital lichen planus in 19% of 399 examined women and 4.6% of 174 examined men, nail involvement in 11 patients, lichen planopilaris in 6 patients, esophageal lichen planus in 6 patients, and conjunctival lichen planus in 1 patient. Thirty-three patients developed lichen planus in 3 or more sites.

Conclusions. Because a relatively high percentage of patients with oral lichen planus develop extraoral manifestations, a thorough evaluation should routinely be performed. A complete history and physical examination by a multidisciplinary group of health care providers uncovers common and uncommon extraoral features of the disease.

----------------------------

Esophageal Lichen Planus: Case Report and Review of the Literature.

Case Report

American Journal of Surgical Pathology. 24(12):1678-1682, December 2000.
Abraham, Susan C. M.D.; Ravich, William J. M.D.; Anhalt, Grant J. M.D.; Yardley, John H. M.D.; Wu, Tsung-Teh M.D., Ph.D.

Abstract:
Involvement of the esophagus by lichen planus is a rarely reported condition. The histologic features of esophageal lichen planus, which may differ from those of cutaneous disease, have only rarely been illustrated. We describe a 58-year-old woman with skin and oral lichen planus who presented with dysphagia and an esophageal stricture that were ultimately diagnosed as esophageal lichen planus. Multiple esophageal biopsies demonstrated a lichenoid, T cell-rich lymphocytic infiltrate, along with degeneration of the basal epithelium and Civatte bodies. Correct diagnosis of esophageal lichen planus is critical because of its prognostic and therapeutic distinction from other more common causes of esophagitis and stricture formation.

See full report

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Esophageal lichen planus: the Mayo Clinic experience.

Dis Esophagus. 1999;12(4):309-11.
Harewood GC, Murray JA, Cameron AJ.
Dept of Gastroenterology, Mayo Clinic Rochester, MN 55905, USA.

Lichen planus (LP) is an inflammatory papulosquamous disease which may affect the squamous epithelium of the esophagus. We reviewed six patients with esophageal lichen planus (ELP) seen at Mayo Clinic Rochester between 1984 and 1998. The presenting symptoms were dysphagia (in all six patients) and odynophagia (two patients). Cervical esophageal strictures were seen in four patients; average number of esophageal dilatations required was 15 (range, 10-18). Esophageal biopsies demonstrated the classical histologic findings of ELP in two patients, and a lymphocytic infiltrate in the other four. Concomitant lichen planus (LP) was seen at other sites in five patients: all five had oral LP preceded by ELP symptoms in all five; three had genital LP preceded by ELP symptoms in all three; two had dermal LP, preceded by ELP symptoms in one. Proton pump inhibitors were tried unsuccessfully in all patients. Four patients were started on systemic steroid medication; three had resolution of symptoms within 1 month.

PMID: 10770369 [PubMed - indexed for MEDLINE]

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Esophageal Lichen Planus

Archives of Pathology and Laboratory Medicine: Vol. 132, No. 6, pp. 1026–1029.
Vishal S. Chandan, MD; Joseph A. Murray, MD; Susan C. Abraham, MD


Esophageal lichen planus is an under recognized condition, with fewer than 50 cases reported to date. Unlike cutaneous lichen planus, esophageal lichen planus occurs almost exclusively in middle-aged or older women who also have oral involvement. It commonly involves the proximal esophagus and manifests as progressive dysphagia and odynophagia. Endoscopic findings can include lacy white papules, pinpoint erosions, desquamation, pseudomembranes, and stenosis. Histologic features of esophageal lichen planus have only rarely been illustrated. They differ from those of cutaneous disease in several respects, including the presence of parakeratosis, epithelial atrophy, and lack of hypergranulosis. Correct diagnosis of esophageal lichen planus is difficult but bears important therapeutic implications. It is typically a chronic and relapsing condition that can require systemic or local immunosuppressive therapy and repeated endoscopic dilatations for esophageal strictures. Esophageal lichen planus may have malignant potential, as evidenced by 3 patients who developed squamous carcinoma of the esophagus after longstanding disease.

From the Division of Anatomic Pathology (Drs Chandan and Abraham) and the Division of Gastroenterology and Hepatology (Dr Murray), Mayo Clinic, Rochester, Minn. Dr Abraham is currently with the Department of Pathology, The University of Texas M. D. Anderson Cancer Center, Houston

Accepted November 28, 2007

See Full Text

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Two siblings with lichen planus and squamous cell carcinoma of the oesophagus.

Case Reports

European Journal of Gastroenterology & Hepatology. 18(10):1111-1115, October 2006.
Schwartz, Matthijs P. a; Sigurdsson, Vigfus b; Vreuls, Willem c; Lubbert, Pieter H.W. d; Smout, Andre J.P.M. a

Abstract:
Lichen planus is a mucocutaneous disease which can also affect the oesophagus. Unlike in oral lichen planus an increased risk for the development of squamous cell carcinoma in the oesophagus has not been established. We describe two sisters with a history of long-standing cutaneous lichen planus who developed oesophageal squamous cell carcinoma, diagnosed at the ages of 68 and 70 years, respectively. In one of the cases, dysplastic areas were identified by high-magnification chromoendoscopy. In both cases, oesophageal resection was carried out with a curative intent. For the first time these sibling case reports suggest an increased precancerous potential of oesophageal lichen planus.

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Dis Esophagus. 2003;16(1):47-53.

Lichen planus esophagitis: report of three patients treated with oral tacrolimus or intraesophageal corticosteroid injections or both.

Keate RF, Williams JW, Connolly SM.

Division of Gastroenterology and Hepatology, Mayo Clinic, Scottsdale, AZ 85259, USA. keate.ray@mayo.edu

Clinically significant involvement of the esophagus is uncommon in patients who have lichen planus, a common disorder of squamous epithelium. In three patients who had oral, cutaneous, and esophageal lichen planus, endoscopic intralesional esophageal injection of corticosteroids (in all three patients) and oral tacrolimus (FH506) (in two patients) resulted in improvement in dysphagia, a less frequent need for dilation, and improvement in esophageal inflammation.

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Lichen planus in the oesophagus: are we missing something?

Shenfine J, Preston SR
Northen Oesophago-Gastric Unit, Royal Victoria Infirmary,
Newcastle upon Tyne, UK.

Lichen planus of the oesophagus is rare with a predilection for middle-aged to elderly women. There is a potential risk of malignant transformation to squamous cell carcinoma. Squamous cell carcinoma of the oesophagus still accounts for 30-40% of oesophageal cancer cases in the west and is almost exclusively the disease still encountered in the rest of the world. An increased awareness of oesophageal lichen planus is suggested in patients with cutaneous, oral or vulval disease. Endoscopic investigation of patients with lichen planus, possibly initially limited to those with oesophageal symptoms, and consideration of surveillance in patients with proven oesophageal lichen planus, will aid understanding of natural history of lesions and may help detect early stage tumours. Squamous cell carcinoma still accounts for 30-40% of oesophageal cancer cases in the west and is almost exclusively the disease still encountered elsewhere. Lichen planus of the oesophagus is potentially a premalignant condition for squamous cell carcinoma that could be surveilled in order to detect early-stage tumours with a consequent greater chance of cure. Oesophageal lichen planus is, however, rare, frequently asymptomatic and although the majority of cases occur in conjunction with lichen planus in other sites, the oesophageal features may be subtle and easily missed by endoscopic assessment. Furthermore, the histological changes are difficult to interpret and there may be significant underreporting. As a consequence, the true prevalence of these lesions is hard to determine. The difficulties in detection may mean that we are underestimating the frequency of oesophageal lichen planus. Endoscopic detection may be aided by the use of magnification indigo carmine chromoendoscopy and this warrants further evaluation. The risk of malignant transformation is currently unknown but may parallel that of oral lesions at approximately 1-3%. An increased awareness of the condition can only help to identify more cases and increase our understanding of this interesting condition.

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My mouth is burning so badly. The sores under my tongue have blistered with white chunks of flesh pulled tight and making it look as though the skin on each end of the sores are trying to grow together like scar adhesions. Pain so bad. Both sides of the tongue are bright red and deeply indented and beneath the tongue it is swollen, so if I try to talk or chew, the act of tongue rubbing against the teeth is very very unpleasant. I know that they say that the roof of the mouth is never affected but I don't think so. I can put my finger up there and gently rub and it hurts too. I just don't have a mirror to see it or a way to get my camera to catch a look at it.

I have been taking the curcumin. Not the brand I was told to get, but one similar. Perhaps it is not the right strength or quality as I really don't see improvement and now it's getting worse enough to drive me nuts.

It's not just the mouth sores, the erosion of my flesh, the tenderness. but since it affects my right side more than the other, I am accutely aware of the gland beneath my tongue on the right side is swollen and painful, and the right of my neck is sore and feels inflammed and when I swallow it feels like something is caught in the back of my throat beneath the furthest back part of my tongue. It hurts! I have been taking some hydromorphone to help with the pain, but feel like this is like killing an ant with a hammer. But tylenol around the clock is not reaching the pain.

So last night I got desperate. I hunted down an old prescription of Clobetasol and slathered it around my mouth. This is a lot like taking a jar of vaseline and rubbing it in, under, around your teeth, gums, inside the cheeks and all over your tongue. Gross, huh? I just don't know how much the mucous membrane can absorb. It seems like pouring grease over the back of a duck. How could it sink in? I take a dry washcloth and pat the insides of my mouth before applying in the hopes that it helps. If my own moisture isn't there to protect the flesh then, maybe it will seep in a little bit. I applied more this morning. I was able to take tea and toast this morning but nothing else until later, a can of coconut water. By the time I was nearly done with it, my mouth was burning. So for dinner I tried cooking a bit of hamburger and put it between two halves of bread. That was okay except for the chewing. At least the burning wasn't too bad, and able to drink some cool water with it.

It is my personal belief that applying medicine to the tongue, though perhaps it might absorb it, the rest of it slides right down your gullet. There are articles that suggest Oral Lichen Planus has been found in the esophagus, so I don't mind that the Vaseline, I mean the clobetasol ends up draining down there. If it is actually coating the esophagus, and if it is being absorbed, then maybe there is possibility of healing. Did it work for me in the past? Well, if I was constantly slobbering the stuff in my mouth all day, it would keep things down to a dull roar, but not eradicate it. Taking systemic Prednisone makes if feel cured. Though I know that Oral Lichen Planus cannot be cured. Why not? Damn it!

Curcumin for Oral Lichen Planus

Monday, July 21, 2008

A very rough and stressful day. I had to go to the Housing Authority for an appointment, which is clear on the other side of the county. Since I awoke not feeling well, the furthest thing from my mind was to take a ride in the car anywhere. Still I made it on a nearly empty tank, had my appointment, which I think was a waste. I think they have made up their mind that I must move out. More stress to face, I suppose, but nothing new in life. Oh well.

I managed to find a gas station, and learned I had ten bucks on me. I stopped, paid inside in advance and went to put the gas in my car. It was a little tough getting it shoved in there, but succeeded. Turned on the right button for the gas I wanted and started the nozzle. A moment later the nozzle popped out of the gas tank and landed on the ground continueing to leak gasoline. I just reacted. I was not about to grab it up. I just couldn't make myself. So I shouted at the guy inside telling him the gas is leaking out. He shrugged his shoulders. So I really shouted very loudly, HELP ME! So he sauntered out to see what the problem was. He picked it up and inserted it back into my car and I got the rest of my gas. (Later, I wondered how much money I had lost). I was pretty shaken on the way home, and took a tranquilizer. I realized that my reaction was based upon the Trabing Fire which was started by an overheated muffler a few weeks ago. The Trabing fire borders upon Watsonville. I am a bit obsessed with all the fires we have had lately. Not for fear of burning but for the very uncomfortable coughing from Asthma. So, I guess that was at the base of it all.

From the time I left home, attended my meeting, got through the gas problem, drove back during rush hour traffic. (Why do they call it rush hour traffic? It should be called hurry up and wait traffic!) I had been away about 7 hours. Exhausted I fell into bed, severe pain, had to drug up and just lay there. My bones ache, especially bothersome is my rt knee. It keeps stabbing when I walk, and gives out on me occasionally, and that just throws the rest of me off. Oddly, both elbows are killing me too. I have NEVER had elbow pain before, but both knees and both elbows have been creeping up on me for several months now. I always notice when the OLP is flared up so is my arthritis and fibromyalgia pain. Low energy.

Well, I called the ortho doctor's office and talked my way into seeing him tomorrow. Perhaps he will take pity on me and give me an injection. I guess that would be cheating, because it would be steroids. I wonder if injected steroids would make my mouth better, even if they are in a different part of the body.

Sunday, July 20, 2008

Clinical Trials for Oral Lichen Planus

These are trials that are open at the date of this blog posting. If you are reading this at some future time, you may still click on the link and it will take you to where some newer Clinical Trials will be listed, and you can go from there:

1
Recruiting
A Clinical Study of Curcuminoids in the Treatment of Oral Lichen Planus
Condition:
Oral Lichen Planus
Interventions:
Drug: Curcuminoids; Drug: Placebo

2
Recruiting
Pimecrolimus Cream for Oral Lichen Planus
Condition:
Oral Lichen Planus
Intervention:
Drug: Pimecrolimus cream

3
Recruiting
Safety and Effectiveness of Efalizumab to Treat Oral Lichen Planus
Condition:
Lichen Planus, Oral
Intervention:
Drug: efalizumab

4
Recruiting
Clinical Research Core Dental Screening Protocol
Condition:
Oral Mucosal Disease
Intervention:


5
Recruiting
A Study to Evaluate the Safety and Effectiveness of Etanercept in Treating Lichen Planus on the Oral Mucosa or Skin
Condition:
Lichen Planus
Intervention:
Drug: Etanercept

Monday, May 12, 2008

The research doctor called and asked me if I could come in next week to begin the trial. I had to tell her I had gone back on the prednisone, and wasn't 30 days past that. She then suggested I come in the first week of June. I went ahead and set up two appointments with her, but wonder if I will be "sick" enough for her trial. She explained to me that I only need to have a pain count of 3 on the scale of one to ten. It's hard for me to call that as I go from no pain, or no awareness of pain to suddenly through the roof with pain. It just creeps up on me. Then, it's pain all the time. So, I screwed myself for getting on the trial this month.

Erosive Oral Lichen Planus

Saturday, May 10, 2008

Since I have been coming down off the prednisone again, it's been having the effect of putting me into major panic attacks and anxiety. If I take tranquilizers all day long it might quell it. But, don't want to do that. I do take a little bit when it gets unbearable.

Aside from the anxiety, I feel well otherwise. Able to walk, my mouth sores are reasonably healed and GERD is fairly well controlled at the moment. But, still pretty much insomniac. I know I would be better if I could get some good regular sleep.

Erosive Oral Lichen Planus

Saturday, April 19, 2008

I wrote the following to a friend I met on myspace who also has Lichen Planus:

I usually take anti-fungal meds, like diflucan because when I am flared up I have thrush as well as LP. Plus, if I am on prednisone alone, it seems to create a welcoming committee for the fungus. It used to be one med for a while then the other. But, we finally figured out I have to take both at once.

I used to take Nystatin swish, but told to stop taking it because there is sugar in the ingredients! And sugar feeds candida, thrush, fungus, whatever.

I always felt the swishes were a waste of time and money too. I guess some people have milder cases and it works for them.

The next step is to put me on a clinical trial. But, I have to be completely free of any cortisone-like meds including one of my asthma meds. So, been off them a few weeks and back to horrible OLP, and that is why I put myself right back on the prednisone. I have a follow up appt soon, and I know she will understand.

I couldn't get on the trial when it was all flared up again (and I couldn't wait any longer) because the doctor who was doing the trial was away. Due to spring break? I guess.

So, I don't know if we are going to try again or not. I hope so, because the medication they are testing will have a lot less severe side effects than the usual LP meds.

The next step, if I don't go on the trial, or if the trial medicine fails for me, is to go on a medicine called Cellcept. At least that is what has been suggested as a possibility. I understand that I would have to be on it for about 8 months and stay on the prednisone quite a bit during the same time.

Cellcept is used when people have liver transplants and such. The problem is that then I might become more susceptible to all kinds of stuff, just like a transplant patient would be. One advantage I think I might have is that my regular doctor's partner is on Cellcept and he is doing well. Plus, she says she will arrange for he and I to get together and talk about it, if it looks like my next option is the Cellcept.

I really want this trial med to work, though.

Erosive Oral Lichen Planus

Tuesday, April 15, 2008

The Oral Lichen Planus was a mess again. It's not just my mouth, but all of me feels so sick, walking was terrible.

I wasn't going to wait for the trial. So, I am back on the prednisone which makes me want to do anything but sit still. I have seen corners of closets and cupboards I forgot existed. A good thing too. A charity is coming around on Monday and carrying boxes away. Yay!

I can walk better again. No more arthritic pain. I have more stamina, can stay standing longer, bending stooping, lifting, even a visit to the pool for gentle exercise... It all feels surreal to go from feeling practically crippled to this again.

Life is full
.
.

Tuesday, March 11, 2008

I'm so happy my mouth is still doing well. My son and his friend took me out for lunch and I was able to order off the menu without asking for changes! I ate like a normal person! I even had ice in my tea.

Oral Lichen Planus

Thursday, March 6, 2008

I came across a quote about Lichen Planus:

"may be found with other diseases of altered immunity; these conditions include ulcerative colitis, alopecia areata, vitiligo, dermatomyositis, morphea, lichen sclerosis, and myasthenia gravis."

I hit me as kind of odd.

When I was 16 I was diagnosed with Alopecia Areata.
Alopecia Areata is when you lose hair from your head in round circles. They can be about the size of a dime or quarter. Sometimes there can be more than one. It came and went over the years. That's why I prefer to wear my hair long to cover up those round bald spots.

Hmmm....

Crop Circles!!!

I was mortified as a teen to have this hunk of missing hair. It wasn't like I could hide it very well, either. It wasn't hidden among some part of my head where I could pull other hair over it. My first time, the back of my neck all the way up to my ear was bare. It was the style then for a large bow to be worn at the back of the head beneath where you would have a roll of hair.... like a french roll. I told myself that people would just think the bow was pulling my hair out of the way giving the illusion of baldness. It's not something that grows back quickly. It's not like you just shaved a spot on your head. If that was all, it would grow back normally. But, sometimes it would take a year or so. Interesting to me now that no one ever mentioned it, not even the bullies that liked to pick on other kids.

Guess what the treatment was.... steroids!

My hair has always fallen out like that. But, I think the last time it occurred was a good ten years ago. They always say it is caused by stress and that is a bunch of bull****. If that were so, I would be totally bald (Alopecia Totalis)! And if that were true, then what happened in this last ten years? No stress in my life? I don't think so.

Alopecia is considered an autoimmune disease. Lichen Planus is considered an autoimmune disease. Do I have two separate diseases? Or one?

Erosive Oral Lichen Planus

Tuesday, March 4, 2008

Made the trip to San Francisco to see about getting on the new clinical trial for oral lichen planus. But, it looks like it is put on hold for now. Apparently, I have to be in much more pain than I have been experiencing before I qualify. Plus, I have to be off the prednisone or any kinds of steroids for a few months before I can be on the trial.

Erosive Oral Lichen Planus

Friday, February 22, 2008

I've been thinking about how difficult it can be for a person who has oral lichen planus to understand the medical jargon describing the condition. Here's an example:

"Mucous membrane involvement is common and may be found without skin involvement. Lesions are most commonly found on the tongue and the buccal mucosa; they are characterized by white or gray streaks forming a linear or reticular pattern on a violaceous background"

Violaceous? What the hell is violaceous?

Okay, so it's saying that the moist soft parts inside the mouth are affected and it is possible that there might not necessarily be any lichen planus anywhere else.

Sores (lesions) are usually located on the tongue and the inside of the cheeks. When you look at them they look streaky or like some whitish lines all meeting together and the underneath flesh is more of a purplish or reddish color. The insides of a healthy mouth are supposed to be pink.

Tuesday, February 19, 2008

Now that I am titering down off the Prednisone, (10 mg.) I've managed to catch a nasty cold that turned into infection. I only thought it was a sinus infection with a little tight chest from asthma. But, it got worse, fever, chills and all. I'm on the third day on Zithromax and hoping to feel better soon. The only thing that is bothering me is coughing up a little blood.

The next time they give me steroids for the OLP, I'm just going to ask for antibiotics at the same time. Because this happens EVERY TIME, I'm on steroids.

Erosive Oral Lichen Planus

Sunday, February 17, 2008

Lower Lip Blisters (opposite side)

This is the opposite view of the lower lip. Perhaps this is what the dermatologist looked at and didn't see the big blister I was trying to show her. But, even I can see the white stripes and there are multiple bumps that I haven't seen before. They aren't the blisters, though. Those are big and the picture doesn't show them as well as the one I posted the other day.

Saturday, February 16, 2008

Lower Lip Blisters - Oral Lichen Planus

I went to see my dermatologist and asked her to look at the sore in my mouth. She said she didn't see anything. I felt like crying. I was so depressed

So I went to my regular doctor who looked at it with a flashlight. At that time the sores that you see on my lower lip were like big blisters. By the time I took this picture a few days later, the "blisters"  had ulcerated.

Everyone keeps telling me it's Herpes, but the doctor says, "No, absolutely not!" But, I'm going to take some lysine just the same and see what happens.



Please excuse how yucky my teeth look. It is really hard to brush my teeth, and rinsing obviously isn't doing much. I've got to figure out another way to clean my teeth! Wish I had one of those sonic things.

Monday, February 11, 2008

I went to my Rheumatologist today for blood results, which were good. Just a high Alkaline Phosphatase. She was happy to see me walking so well. (due to prednisone). I feel great in this category! I showed her some of the pictures of my tongue, and how much it has improved. She's glad I showed her, as she was just about to order Plaquenil for my arthritis, but apparently it's contraindicated in Oral Lichen Planus. So, she wants to do Cellcept after I get off this treatment, though is putting it back over to the UCSF Stomatologist to decide that for sure.

If I can feel as good as I do when I am on Prednisone and not have such bad side effects, as it produces, I would be soooooo happy. Just these last 10 days has made such a difference in my general well being (except emotional lability and insomnia) that I have a spring in my step and can actually stand up in the kitchen, prepare a whole meal, and clean it up afterwards.... after having gone shopping for the groceries and put them away!

If it turns out that Cellcept is not going to be an option, the plan is to go on prednisone (and Diflucan, forgot to mention) once every 3 to 4 months to keep the OLP at bay, instead of waiting until it takes over again.

Erosive Oral Lichen Planus

Sunday, February 10, 2008

Eleventh Treatment Day

Four hours sleep. Oh my! I've been on Prednisone before, but I don't remember being so very short of sleep. The allergy pill didn't help this time. Felt chills and feverish most of night and morning. Stuffy nose all day, with hoarseness. Am I coming down with something? That's not fair!!!

Took all my dosage about noon, and didn't split it up through the day, as I had been, to see if this gives my body a chance to get tired enough to get some sleep. Took some Tylenol for mild headache (before it turns into migraine).

About 3 pm, I had a melt down. Kats and I were in Kinko's making lots of copies. Actually he was making copies, I was putting papers in order. I just felt so yucky, pain pain started in arm and shoulder went up into neck and jaw. I felt nauseous and clammy and dripping with sweat. I really must be coming down with something. I carry Dilaudid with me for severe pain episodes caused by my internal hemipelvectomy and was sorely tempted to take one at that point. B ut took aspirin instead (double heart dose) just in case. Pain and weakness continued through until we got home where I could lie down and rest. I need sleep! Spent rest of the evening in bed, reading, watching TV and laptop.

Mouth, on the other hand, is still improving. I was able to eat a tuna sandwich again with lettuce and olives! Kats noticed the improvement as I was not wincing, holding my mouth, or turning away from food. In fact he teased me about finishing off the whole thing. Yeah, well, I went so long with little servings of jello, yogurt, Cream of Wheat, overcooked mac n cheese and didn't lose any weight. It seems that I probably will gain now that I can tolerate eating a whole sandwich in one sitting. I am just so grateful to be feeling so much better.

Erosive Oral Lichen Planus

Saturday, February 9, 2008

Tenth Treatment Day

I took 30 mg of prednisone today instead of the 20. May be foolish. But, convinced myself that as I have been tapering down, things were starting to come back. Like the ulcerations beneath my tongue, for example. I didn't regret it, as I can see noticeable change, even since yesterday. My tongue is flattening out. I can only compare the difference to an unmade bed that has now been made. Another example would be that it previously was like an unruly front lawn, and now someone came in, mowed it and made it all clean and neat. Though I still have white stuff on the top and striations underneath. My gums don't feel so sore, either.

I think I need to be more diligent with the Clobetasol gel, though. I forgot to use it today. In fact, I can't find it, now that I've looked for it. Odd.

Finally slept a good night's sleep. My ENT had changed my allergy prescription from Claritin to Zyzal, and I hadn't taken my first Zyzal until last night. Claritin can be taken in the daytime. But, Zyzal is supposed to be taken at night as it has a tendency to make one sleepy. I can't complain! I slept.

Energy was great today, without feeling hyped up. I wish I could feel that way every day. I wonder if that is how other people feel? I have felt tired so long, that having this energy seems a gift.

Was able to eat a scrambled egg and rice for breakfast. Swallowing the rice would have been more challenging in the past, getting stuck on the way down and needed much water to help it along. It is interesting to me that food actually seems more flavorful, even though I had previously thought that I was able to detect flavor naturally. Maybe I was wrong.

Dinner included a bit of pork steak. It was chewy. (No more burning tongue on the sides while chewing) I realize that part of chewing includes pushing the tongue forward and back against the palate. When my tongue was swollen, this added to the inability to chew effectively. Now that the swelling is going down, I was aware of the thinness of the tongue and it's ability to push forward and back.

I wonder if anyone has ever studied the bio-mechanics of the mouth. Well, now that I think about it, I am sure they have. When people have strokes, part of the therapy they get often has to do with such things. Therapists need to know how to teach a person to swallow, chew, talk, etc. So, someone must have studied it.

It really is odd to be aware of all these nuances that are normally taken for granted, that are considered to be done autonomously. It seems as strange to me to take note of these differences, as if I were consciously aware of how the stomach functions. In writing this, I realize it is sort of like the end of a northern winter. Storms and dark clouds all day every day. One suffers through it, gets used to it. It is the way it is. One forgets what it was like to have sunny days and spring flowers. Then, suddenly winter is over (the erosive oral lichen planus is improving) and spring begins to show itself.

When one has been huddled inside one's house throughout a long, dark winter, the new spring days can seem miraculously wonderful, even though it was but a year before, that springtime had made it's umpteenth appearance. No matter how many times one experiences springtime, it comes as if it were some new delight. Everything gets explored with wonder.

And so it is for me. I once had a normal healthy tongue. Then, it got sick, very sick. And now, it is getting healthy again. Even though it was healthy before, I am as joyed as if born anew.

Okay. So perhaps some of my exaggerated euphoria is due to the Prednisone. I admit it is a possibility. But, I just hope is it a natural delight and appreciation for finding joy in the little things.

Erosive Oral Lichen Planus

Friday, February 8, 2008

Ninth Treatment Day

Didn't sleep last night. Seriously. Finally fell asleep at about 6 AM. I'm not sitting there ruminating or anything like that. I just feel awake and alert. If I were to get up, I would have probably cleaned house, or straightened bookshelves. But, I know better than to do that. So, I laid there and rested. I petted the cat, listened to quiet music and occasionally picked up my book to see if I could bore myself to sleep.

That being said, I managed about 5 hours. I don't like sleeping in the daytime as the light interferes with really resting deeply, if you ask me. Plus, neighborhood noises rouse me.

So, I took my same doses today and still feel like progress is being made. I don't know if I am expecting too much, as I would like to have it clear up completely, or at least be quite minimal for as long as possible so I wouldn't have to keep compensating for it, or have to deal with the changes and checking on how things are doing, and trying to figure out if the pain in my jaw, neck, throat or whatever is always due to the Oral Lichen Planus.

Part of my newfound joy in the healing process today was to actually go to Subway and eat a half tuna sandwich. Since they had very well cut up lettuce, I had some on the sub with black olives and one squeeze of light mayonnaise. The tuna was so smooshed that it was like a pate', so it had no chewing challenges. The bread was soft enough that I didn't have to pull with my teeth to chew it. (I never, in my life, thought I would have to consider such minute details, such as how to chew.) I cannot even attribute a burn. Just a slight puckering sensation. It has been so long since I've had tuna, that maybe I just don't remember that it is a natural part of the flavor of Tuna. Or maybe the puckering was from the Mayo. I doubt it.

One annoying problem, though, is that after eating, the food sticks to the teeth, both on the inside and out, and gets tucked firmly away in the folds of the gums. Even though I can lift my tongue and turn it certain ways, the dexterity to use my tongue to reach over the teeth to dislodge the food is not possible. I even wonder if this is a permanent condition as it seems to me that it has continued to be the case throughout the last several years. So, unfortunately, I either have to go find a clean bathroom and brush my teeth or water swish, thereby discarding a significant amount of food. I have a hard time accepting that public restrooms are, in general, sanitary enough to feel okay about doing that. So, I do something that is probably equally unsanitary. I use my finger to get in there and push the food into position to swallow.

Too much information. Huh?

Erosive Oral Lichen Planus

Thursday, February 7, 2008

Eighth Treatment Day

Same dose of Predisone and Diflucan for the next couple days until I titer down again. I realize that my use of the Clobetasol Gel is inadequate. Though I put it under and on top of my tongue and a light rub against the insides of my cheeks, I did not diligently apply it along the gums. I took a look-see in the mirror and the lower gums seem to have benefited some, but the top gums definitely need some help. There are some white patches, and redness. I hadn't really taken a good look before as I was so focused upon what was obvious. It seems that my lips are responding too.
I am happy that there is improvement. Not such a sore throat, and the aching in my jaw, cheek and neck has disappeared. The robin's egg sized nodules (sub-lingual, I think they are called) are still swollen, firm and sore. But, getting better.

I was able to eat oatmeal for breakfast, later some avocado, then rice and squash for dinner. I feel quite ravenous, so there were second helping, except for the avocado. I have got to be able to chew salad pretty soon, or I am going to balloon up, and since I am already zeppelin sized, I don't want to do that!

Was able to brush teeth without a high degree of pain, and spend a little more time tolerating it. Gums do bleed, especially around the two back bottom teeth.

I am a bit concerned about the fact that I don't feel tired at all. I guess most people would like that, but I wonder how long I can keep this up without crashing.

The emotionality is still within "normal" limits, if one considers the fact that I work with cancer patients. I have had contact today with the husband of another sarcoma patient who is in last stages. Actually, now that I think about it, maybe having some tears and sadness is acceptable. I can't imagine what it would be like to repress those feelings. Maybe more stressful than not expressing myself? Thank heavens for friends so we can be there for each other.

Erosive Oral Lichen Planus


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