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.

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

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