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

Seventh Treatment Day

Again 20 mg Prednisone, and Diflucan. Did I mention that the other day I had started on Clobetasol Gel to place on my tongue, under and insides of my cheeks. I really like this much better than the previous prescription I had for Clobetasol, because that one was like vaseline. It was an ointment. It just didn't stick well, and I always ended up feeling as though I had just coated my throat and esophagus with a grease job.

After talking with Dr. PV today, she said it is not necessary for me to use the Nystatin swish anymore. In fact, it is my understanding that it might be counter-productive because of the ingredients. It contains sugar, which is conducive to Yeast-Fungus-Thrush overgrowth.

I am wondering if the titering down on the Prednisone is happening too fast. Though there has been improvement, today I noticed that the two ulcers under the tongue sort of near the front have begun to return. The one on the right is larger. The one on the left seems to have a tightness to it, as the flesh appears to be pulled into a "pleat" on each side of it.

The top of my tongue does look so much better. The taste buds at the back look quite a lot better, and the ones on each side from the back to about one third forward look good. Though, I am not a good judge of this, for sure. But, they do look better to me.

The front of the tongue still is so smooth that I don't see any taste buds at all. That area is flat. The center of the tongue has a lot of the typical white "lacy" appearance of Oral Lichen Planus. It's not all that much of a delicate lace, but more crammed together. The front of the tongue is still quite a bit red and shows a lot of blood vessels. Laterally, still quite red, more on the right. The deep "hole" seems to have disappeared. YAY!

Ate oatmeal with raisins today. I should have boiled the raisins longer before putting in the oatmeal, as I had a lot of chewing to do. Firm chewing is too challenging just yet!

I never in my life would have guessed that I would be paying attention to such details on this part of my anatomy. I have better things to spend my time on. But, I think it is important to become more familiar with the changes and improvements. I really hope that I can get to the point where I will recognize when flare ups are beginning to manifest before everything gets so bad again. I really don't see any point on staying on the Prednisone all the time. There has got to be a balance. (Did I say this already?) I just have to catch it before it gets serious, and become familiar enough with the symptoms ahead of time.

I still have a problem with the stress angle. If I were to keep a calendar marking stresses and trying to compare to when I have flare ups, I just cannot imagine a correlation. If I have stress one day and not the next, or one week and not the next, then how would a flare up that occurs 3 months later be related? Even if I have a full month of stress, how could a flare up 3 months later be attributed to that stress?

If my mouth was completely (or almost completely) cleared up for many months, and then, I have a month worth of stress, and then immediately have a big flare-up, then I would be more likely to accept the possibility of a relationship.

I was originally diagnosed in 1995. It was a little lacy in the side of my cheek. I have been in all kinds of stresses since then, with little changes in the lace. So, what brings on the flare ups?

I think part of the answer to that is my age. It is my understanding that the older we get the weaker our immune system becomes.

Erosive Oral Lichen Planus

Wednesday, February 6, 2008

Sixth Treatment Day

Still at 20 mg. Prednisone, Diflucan and using the Nystatin swish. Only four hours of sleep last night. Here I am titering down off the Pred, and NOW I can't sleep! I took an ativan, but damn, I sure wake up in a fog. Is it worth it?

Though the right lateral side of tongue is still very sensitive to the teeth touching against it, I tolerated a way better diet today. I ate a microwaved turkey dinner, mashed potato and dressing, and even cooked some kabocha squash.

Heaven. I'm in heaven!

In a communication with a friend in Chicago who almost died from a fungal infection which developed within a closed surgical wound, she informed me that she has blood tests done regularly to see if her "Aspergillus" is under control. She has been on anti-fungals for a year.

I am unaware of how many kinds of fungal infections there are, and wonder if they are different depending on where they are located in the body. So, for example, mine seems to proliferate in my mouth. But does that mean it could also be systemic....in my bloodstream? Can the degree of my "infection" be followed and put to rest BEFORE it flares up? Or is it completely dependent on the Lichen Planus manifestation to encourage it to grow?

I know there is a very delicate balance with certain medications that seem to encourage Thrush (Candida) to proliferate. So, for example: Antibiotics manage to kill off the good bacteria in the gut, thereby causing diarrhea, which seems to be related to an increase in fungal infection. At least, that is the way it was explained to me by a gastroenterologist. He suggested that I take yogurt to reverse this. If this is the case, then why doesn't yogurt take care of thrush?

I guess I need to research the facts!

Another friend who has had major surgery within her neck, including laryngectomy, and spent many months living with Thrush, told me that, though she could eat nothing at all, she sucked on potato chips. She thinks that the salt helped her Thrush.

Hmmm....... ?

As much as I crave salt, I cannot tolerate much at all. Not yet. Though, I am sure some must have been in that microwaved turkey dinner!

Note: I found the following from Mayo Clinic article on Thrush,
Try warm saltwater rinses. Dissolve 1/2 teaspoon of salt in 1 cup of warm water. Swish the rinse and then spit it out, but don't swallow.

Today, I learned another friend died. Of course, I cried. I have cried a lot over the last two months. Too many deaths when you take care of a cancer support group. Some would say, "that is why you have such a bad flare up! Too much stress!"

There is supposed to be a connection between stress and Oral Lichen Planus. But, what about the times when I have little stress going on my life for months at a time and I still get bad flare ups?

I think having Oral Lichen Planus is stressful enough all by itself. I have been in stress all my life. Isn't everyone? Why do some get OLP and some do not if we are all in stress? I cannot believe that stress is the cause of OLP. More likely, I think there must be a genetic component, like in cancer when the cells mutate. Though a very, very small percentage of people with OLP get cancer, it makes me wonder.

Everyone is supposed to have cancer cells floating around in their bodies, and we are constantly killing them off. But, when our immune systems begin to fail, then, supposedly that is what allows the cancer (whatever kind) to grow.

That is probably a very simplified description, and I know there is a whole lot more to it than that, especially after reading too many incomprehensible medical articles on the subject. I just don't have the bio-molecular education I would need to understand it all.

I take that back! Even those with that kind of education have told me they can't understand it all. Only their sub-specialties.

To honor the memory of my dear departed friend, "Zipper Tom" and just to provide some uplifting beautiful music on an otherwise depressing Blog, here is Amir Beso, playing "Balkan Nights"

Erosive Oral Lichen Planus

Tuesday, February 5, 2008

Fifth Treament Day

My Prednisone intake is now down to 20 mg. daily.

Since I got some more of my prescriptions approved and filled, I now have the Dexamethasone mouth swish, and the Diflucan anti-fungal pills. I have to check my notes on the swish, because I am already using the Nystatin swish, which burns like hell. I think it has an orange citrus flavor in it. The last time I had Nystatin, it had a cherry flavor. Not that I give a hoot about flavors all that much, it's just that you would think that if the medicine is for someone with a sore mouth, they wouldn't use anything citrus.

On the healing front, there now seems to be a deep hole in my right lateral tongue (which previously had been covered up?) At least that is what it looks like in the mirror. It's not just a pin point, but more like a gouge. So, no wonder it still hurts on that side. Maybe I shouldn't be blaming my teeth. In comparison with the picture on day two it appears that the white stuff that coated the tongue has acted like a thick blanket. Now it is thinned out quite a bit and no longer protects that side of the tongue.

I was able to eat oatmeal again today with some well cooked raisins mixed in. Yogurt, and later a piece of bread with well smashed avocado. Things are looking up!!!

Even though I am a bit sleep deprived, I am not feeling the effects, in fact I have energy, and a sense of well being that I haven't experienced in a long time. Too bad that Prednisone is not safe to take all the time! It is so nice to be able to work at something for a sustained period of time without having to go lie down exhausted and in pain. I actually went out in the garage about an hour and flattened boxes to put in the recycle bin. What a blessing to be able to do this!!

I am less emotionally labile. I think it helped that I took an Ativan last night at bedtime, perhaps. I do have that ordered by my shrink for when I might have anxiety. I don't think depression is anxiety, but maybe the relaxing effect of the Ativan removes my focus from the intensity of the stressful occurrences in my life right now.

My granddaughter had her surgery today to remove a large benign bone tumor from below the inside of her knee on the tibia. So, that is one concern off my mind. Now all she has to do is recover, and her mother needs to have a restful and peaceful life for the next couple weeks. (That's gonna be difficult)

Erosive Oral Lichen Planus

Monday, February 4, 2008

Fourth Treatment Day

Couldn't fall asleep til 3 am, got up at 9 so not too bad. Was emotionally labile. I had received bad news about two friends in the last two days, and so today it hit me. Prednisone, shall I blame it on that? Calmed myself down and got on with life.

I am now down to 30 mg. prednisone. Found my old Clobetasol and using it temporarily as my new prescription for the gel is not yet available.

Kats took some pics of my mouth. I can see some improvement. The ulcers are not so puffy and seem a little less red. The swelling in my jaw is down and not so achy. I was not able to eat toast with tea at breakfast time. But for lunch was able to eat some soft chicken and a bit of white bread. Salad was a mistake, except for the beets. It is too painful to actually do any serious chewing. I noticed that the blue cheese dressing did not burn too much. Though maybe that is because I only had a little. But, it was nice just to have some different flavor.

I have been only eating soft foods, and not very nutritious. This last two months even having energy to prepare a proper meal was beyond me. Macaroni and cheese, yogurt (depending on the acidity of the fruit), jello, well-cooked rice, soup, over-cooked veggies. You would think ice cream would be nice, but it is not. Anything icy or hot just isn't worth the pain and added insult.

Several times during the day, suddenly it will become painful to talk. But, this is better than it was. The sores on the lateral side of the tongue, seem to be bumping up against the teeth, and this is quite painful. So I avoid talking during those times. Disconcerting to my boyfriend when he wants to converse. But, he understands. I think the lack of teeth in my mouth sets my jaw off to one side and that interferes, too. If I really have to say something, sometimes it helps to keep my jaw closed and just speak like a ventriloquist.

Was able to have a little ice cream in the evening. I have to let it melt a bit, otherwise the coldness is unpleasant.

Erosive Oral Lichen Planus

Sunday, February 3, 2008

Third Treatment Day

I am sleeping okay. Took 20 mg. when I awoke, and 10 mg. in the afternoon.

Feel less shaky. It only happened when I first got up. Then settled down. Ravenous appetite, but for the life of me, don't recall what I might have eaten, except oatmeal with cranberries, and my usual cups of tea. Oh yeah, had another avocado sandwich. Later, about 6 pm Udon noodles and a little bit of chirashi, which is a soft rice with a bit of seaweed and long strips of egg. Also dared to eat a brownie but that was a mistake. Aside from the crunchiness scraping my mouth, the chocolate burns as if I were eating hot pizza. I shouldn't be so daring, I suppose.

Later at home rinsing out my mouth with water was particularly painful. (related to the chocolate, I wonder?) Actually brushing my teeth in a healthy way has been extremely challenging for quite some time now. Rinsing out my mouth with lukewarm water is sometimes all I can do. I have a baby's toothbrush which seems a big waste to me. If I am gonna brush and irritate things, I might as well get the job done correctly, or at least as best as I can. So, the baby toothbrush is desperate measures. Toothpaste is pretty much out of the question, as they all have stuff in them which aggravate it. So, I use a baby toothpaste. Bubble Gum flavor, yuck!

Previously, I had given up on flossing until I figured out that might be making things worse. Advertisements for mouthwash and toothpaste are always mentioning bacteria. So I continue to attempt flossing as best as I can tolerate. This last few weeks, it has been nearly impossible. Even though there are special (expensive) mouthwashes available that are supposed to be gentle and good for people with mouth problems, it is ironic that they have peppermint in them!!!

Generally, it seems like the redness has gone down a bit, and one of the ulcers seems to be disappearing. After eating, it is difficult to get food bits unstuck from my teeth. Later, I took my first dose of Nystatin swish. It burned so bad, my eyes watered. I still have some lidocaine swish, so maybe next time, I will mix together and see if it helps. The sweetness of the Nystatin ought to cover up the disgusting flavor of the Lidocaine.

It is a wonder to me that I have any sense of tasting flavors at all with the tongue so burned off of it's natural taste buds. Or does it just look that way?

Haven't started on my systemic anti fungal med yet, as I haven't gotten my replacement anti cholesterol medicine. Will take care of that Monday.

Saturday, February 2, 2008

Second Treatment Day

Since I didn't get to sleep until late, I didn't get up 'til late. However, at least I didn't wake up with my ass dragging as I usually do. Still have that shaky feeling though. I took 20 mg. twice today. First dose as about 11 AM. Second dose about 5 PM. I began to settle down earlier and made some decaf tea with a melatonin and herbal sleep formula in it. Was able to feel sleepy easier. But, still awake about two in the morning. It's not that the Prednisone makes me feel buzzed. I just feel so good! Tiredness is not a part of it.

Interestingly, the back of my throat doesn't feel so raw. I can see a little bit of improvement. Tongue is still swollen though. Makes it hard to eat anything. I was able to eat oatmeal with cranberries and later for lunch an avocado sandwich. I know the avocado has calories, but it is a "good fat" and my mouth can tolerate the softness and the whole wheat bread is small size and half the calories of other breads. I couldn't toast it, though. Not yet.

Emotions are a bit on edge, feel a bit hyper, like the engine is revving fast, but the car is going slow. That's understandable as my body hasn't had energy in so long, it doesn't know how to get up and go so well.

I was able to drive to the store and spend a little time shopping. Though exhausted by the time I got home. But, it was nice to just get out and do something "recreational".

I came across an RSS feed specific to Lichen Planus, which I put in in my Bloglines Feed to refer to later.

Taking a moment to investigate the contents while I had my morning Tea, I was surprised to see this title, "Malar Lichen Planus: a New Variant". What an odd coincidence after my writing about this yesterday. Unfortunately, like so many informative up-to-date medical articles it is for sale. (nearly $50!) Wish I could read it to determine if it is speculation, or considered to be a medically documented association between OLP and Malar rash. (and peer reviewed would be nice) It would certainly explain why my face gets so red when I am in a flare up, if it is so. Interestingly, the redness on my face fluctuates. One moment during the day, I will realize that it is red, because suddenly it is burning. And later in the day, it is not noticeable. Even putting a cold wet washcloth on it doesn't remove the burning sensation.

Anyhow, I wrote to the author asking for a PDF copy of the article. So, we shall see.

Erosive Oral Lichen Planus

Friday, February 1, 2008

First Treatment Day

Since I was unable to get my Prescriptions filled yesterday, I got part today and began to take my first dose of Prednisone, 2o mg. 3 times. Took first 20 as soon as I got up, then a few hours later, then a few hours after that.

The last time I was on Prednisone, this was the dosage I started on, and I didn't take it so closely. But, because I had waited until evening to take my last dose, I had been unable to sleep, so that is why I took them so closely together. It made me a bit shakey. But, nothing intolerable. Still in the evening I didn't feel tired enough to sleep. Not as bad as last time, but I knew if I gave into it, I would. So, I laid down and read for a while. Unfortunately, when I finally grew tired, it was 3 AM.

I forgot to take the Nystatin mouth swish today.

Oh, well. At least I do feel better. I don't feel like I am dying and that is a big improvement.

The mouth picture shows the swelling on the right side of my jaw. It is much more noticeable than I thought. I had only considered it to simply be my double chin. But, the picture brings it out. No wonder it aches so much, all the way into below my ear.

Not wishing to complain. Just stating the medical facts. Just hope this will help someone else going through this to see how it is working for me. If I can get through this, then someone else can.

Erosive Oral Lichen Planus

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