Thursday, January 31, 2008

No RX Filled

Note to friend:

Dr's appt went better than I thought. No need for biopsy yet. Got to get it under control first. MAJOR Steroids for "as long as it takes". Return visit in two week intervals. Then, consideration for biopsy if insufficient approval.

My further comments:

The dx now is Severe Oral Lichen Planus with a question of Pemphigus also. I have so many ulcers in my mouth, the right side of my face is swollen, plus swollen glands. I am so exhausted. complain complain complain!!! They brought in a cameraman to take more pictures again. Poor guy, I felt sorry for him, he winced. You'd think he would be used to doing this.

I asked doctor about the glutamine. She said keep taking it, as it can't hurt and who knows, maybe when things are better controlled it will help more than we can see right now.

Unable to have my UCSF prescriptions filled immediately as they have to be ordered from distributer. Called my primary care doctor who ordered by phone the steroids and mouth-swish medicine, (Nystatin) which had been part of the way it was handled in the past, so that I would have an easier time with renewals.

In the meantime, I have noticed the same as I have noticed before, sometimes. I now have a rash across my cheeks, bright red and burns badly. The picture to the right was taken August 2005. It is odd because it seems to come and go even within a 24 hour period.

Often my right eye gets very inflamed at the same time, but it doesn't seem to be like that right now. In previous eye exams, I was told I had "dry eye" and I have used artificial teardrops since then. Another time when it was really, really bad, the ophthalmologist told me it was called scleritis and gave me prednisone eye drops to take. As long as I did that, when it flared up, it really helped. But, another Optho, later on, discouraged me from taking the drops as they could cause blindness, he said. He was able to, however, insert little, (I don't know what to call them.... seeds maybe), into the tear ducts of my eyes. On one side it was the upper tear duct. On the other side it was the lower. I don't remember which one is which now, but one of them works and the other apparently doesn't.

I now have a prescription for Restasis eye drops, which I believe has some sort of immunity suppressing medicine in it called cyclosporine. I don't like to use them all the time, as it seems it even aggravates things. My understanding is that it works for dry eye by helping to reduce inflammation. Seems they also use a similar form of this to help kidney transplant patients to prevent from rejecting the foreign body part. Hmmm.

It makes me wonder if auto immune diseases are inflammatory diseases. If you get rid of the cause of the inflammation, then the body will stop trying to attack it. Right? But, what first causes the inflammation? Just genetics? I don't think so. Environment? Probably has something to do with it. Stress and emotional problems as some doctors would say, I am sure. How do you scientifically prove that without a large cohort?

Seems to me, labeling ANY medical condition as caused directly, and only by stress, in my opinion, is a unjust fallacy. Unjust, both, to patient as well as practitioner. It's an easy way out of seeking the truth, of using scientific knowledge to it's best degree. There are no easy answers and they must be sleuthed out as though Sherlock was in charge. The doctor is Sherlock, the patient is Watson. Between the two a team is formed and no one stops until their are definitive answers. The eye picture was taken March 2003.

With Erosive Oral Lichen Planus there is scientific evidence that makes it recognizable. Would there be any other differential diagnosis? Is the Pemphigus diagnosis that my ENT guy suggested in any way something that it could be confused for....and for so many years? But, no, the original biopsy was definitive, and I even called the pathologist to run the test again.

So then, the question remains. Can Pemphigus and Erosive Oral Lichen Planus coincide? Certainly Thrush accompanies OLP. No doubt there. That has been the problem already demonstrated in my mucosa. Treatments with steroids followed by treatments with anti-fungals. Everything finally gets back to as close to normal as it is going to be for a while and then suddenly my mouth turns into a chemotherapy factory. Or so it seems. When cancer patients suffer from "chemo mouth" they certainly have my sympathy. I cannot imagine how it might be. Mine certainly cannot compare. At the worst, of course the mucosa is swollen, raw, not quite bleeding but ulcerated, for sure. Obviously it sometimes affects the sublingual nodes beneath my jaw and right down the front of my neck and down below the ear. It makes it difficult to chew foods. No crunchy stuff! Nothing that requires a wide bite. No spicey, salty foods. No hot, no cold... lukewarm is best. Anything the consistency of pudding is best as long as it is not sticky, because then there is a problem of not getting it swallowed all the way, or it clings to the teeth. The healthy person would just use the tongue to wash the stickiness away from the teeth but that is way to painful, so I have to either use my finger to move things along, or, more painfully take a sip of water and swish. The act of swishing even the most innocuous substance does more harm than good. So dental hygiene then becomes a great problem. The more I brush, wash out, swish, gargle, the more aggravation it does to the mucosa. How does one keep a healthy mouth that way?

When the tongue swells, I slur. On the phone people don't understand me. I have to spell things out. Peter Pan, sounds like beater dan, for example. So I say P E T E R, and the person says B E D E R? and I say, P as in Paul, E as in elephant, T as in Tom, E as in elephant, R as in Rose. Oh, they say Peter Dan. Then we go through the next spelling game. I just have to live with it. I find that if I allow myself to be frustrated it only sounds in my voice and that doesn't help the other person to feel comfortable. I don't want others to think my own frustration is being blamed on them.

Erosive Oral Lichen Planus

Wednesday, January 30, 2008


Drove for two hours to go see the Stomatologist at University of San Francisco Medical Center. Dr. Greenspan was not available, so I got to see Dr. Pieri. She is awesome!

My ENT doctor had been pretty shocked when I went into see him last week. We weren't supposed to have an appointment until next year, but the pain was getting to me, and the whole right side of my face was swollen right down the jaw, into the neck and down below the ear. I had been putting hot packs, cold packs and Lidoderm patches on it. But, the night before I took a piece of Dilaudid to help me sleep with the pain. By the time he got to see me it was several days later and the swelling had gone down, the pain had lessened, but the sores in my mouth were enough to shock him. There's a nice neutral friendly face, and then there is the concerned face, and then there is the "OMG, this is bad!" face. Needless to say, he wanted me to get a biopsy right away. I reminded him that I already had a biopsy some years ago verifying Oral Lichen Planus. He told me that yes, I have OLP, but this now looks like I have Pemphigus. I wrote it down and decided to look it up later. In discussing the biopsy I asked if we couldn't just take a scraping. After all that last biopsy I had dug a whole into my tongue, had stitches for a while, swelled up, made it impossible to talke or eat and was more painful than what I already had been experience. He wouldn't budge, and insisted that to get a proper diagnosis, a deep chunk of meat of the tongue would have to be removed. He could see my hesitation was more than fear. So, he had me go over my history again. Too bad he doesn't read the typed up history I gave him. But, that's okay. It's probably stuck somewhere in my file. Who wants to go digging around in there when the patient is right in front of him. When I got to the part about having seen the Stomatologist at UCSF in the past, he jumped on it, and told me to go back there asap. He even faxed my records up there, had his employee call and tell them I needed to see someone immediately. Dr. Barker, you are a gem to see my situation clearly, and to make the moves to help me to get what I need for my well-being.

I have been suffering from Erosive Oral Lichen Planus for years. This photo was taken in December 2006. When I was first diagnosed in 2003, I was told it would be less troublesome after the first worst stages of it died down. Wrong!

Now, back to the visit with Dr. Pieri. I first was seen by two medical students. I know it is a teaching hospital. I have been in more than my share of them. Sometimes a student is required to come in and do whatever kind of assessment they are able to do, then they report their findings to the doctor, who may or may not have something to teach them about what they think they learned. The doctor then comes in and does things from their viewpoint. So I didn't mind having the medical students do their thing with me. If they can learn something from my situation that will help some poor patient in the future suffering the same diagnosis as me, then by all means let me help them to learn. A history was taken verbally, although I filled out all that stuff while sitting in the office, it is still part of the medical students duty to do it verbally and to make their notes and observations. The hard part for the young ladies who were doing this, was to look at the problem visually. With gloves on, the first one gingerly approached my mouth. At which point I told her to not worry about hurting me. It already hurts, and if she needs to look and see, then go for it. She took my word for it and, surprisingly, she was a tough cookie. She definitely got a complete look at the insides of my cheeks, the top of my tongue all the way back , the underside of my tongue, the roof of my mouth, my gums and lips. After she was done, her accomplice joined her. Thank heavens she hadn't learned the grab and pull technique, so I had a bit of a break. I am not a person who enjoys pain, but I have learned to tolerate a higher pain level than most people, otherwise, I would have a much harder time getting through life than I am.

So, the two of them stood behind me and came around with their hands to caress my throat from neck to jaw and discovered swellings I didn't even knew I had. Funny, this examination was very gently done. After they left I took a breather, wrote down some notes to myself to remember to ask the doctor.

When Dr. Pieri came in, I was surprised to see her very long shiny braid was no longer there. Instead shiny, curly hair framed her face. I had admired so much her long hair several years ago when we first met, so I missed it. (Of course, momentarily)

We soon got down to business and I told her that Dr. Barker suggested a new biopsy as he felt I have Pemphigus. Though he had looked at it a week after I was at my worst. I have had more improvement in the meantime, before seeing her. She took one look at my mouth and said she could understand why he thinks I have Pemphigus. Then, I went on to ask her if she also thought I needed a biopsy to determine if I now have Pemphigus mixed in. She shook her head. "Your mouth is in bad enough shape, and I am sure it is in major pain. I don't want to add to your troubles right now. Let's get this under control and then make a decision."

She let me know that she was quite sure that I still have Oral Lichen Planus of the Erosive type. Plus, it is obvious that I have a fungal infection going on, too.

I was relieved! I had figured it they were going to do a biopsy in the office, I would have to stay overnight at Xavier and Trish's house. The last time I had a tongue biopsy, even though it was numbed, just the numbing process, itself, hurt. Okay, big deal... uncomfortable, I'll say. Enough meat was cut out of my tongue that stitches were put in. Once I got home the numbing medicine began to wear off, and then the pain increased, my tongue swelled, and the stitches irritated my mouth until the day he took them out. More pain, more swelling. And all that time, I still had a nasty case Lichen Planus to deal with.

So it was nice that I could just drive the two hours home and sleep in my own bed without any more pain than I already have. Just the idea that I will start on new meds and begin to get some control gives me a great deal of hope.

What bothers me about all this is that the standard medical descriptions of Lichen Planus suggest that it is not too bad, just lacy striations on the skin. Seldom are there further descriptions into the erosive sort of Oral Lichen Planus. I often wonder how other people handle the situation. Oftentimes, the lacy kind is hardly ever noticed, or needing much in the way of treatment from what I understand. I was diagnosed with the lacy kind in 1995. The little tube of cream I was given to apply to it lasted me over a year. I didn't really see any point in using it as they were just white lacy markings on the inside of my cheek and didn't cause any problems.

When I started to get the sores in my my mouth I went back to that doctor who didn't really look inside my mouth and told me she didn't see any sores. It was my family doctor who bothered to look, noticed the bullous sore on the lower inner lip, and freaked out. She called the dermatologist who previously didn't see anything and told her what she saw and sent me back to her. By the time I got in to see the derm, the big sore had resolved but my tongue had striations and redness and pain. So she ordered that same tube of cream to put in my mouth.

This picture is also from December 2006. You can click on any of the pictures and see them larger.

I'll leave off here as I am tired and need to go to bed.

Erosive Oral Lichen Planus

Friday, January 25, 2008


I just learned yesterday that on top of my Oral Lichen Planus, I have another autoimmune condtion in my mouth called pemphigus, or at least that's the opinion of the ENT, who wants me to go back up to UCSF for a biopsy of my tongue. OW! I am not looking forward to that. Had one of those before. I'd rather have pelvic surgery!!! (only kidding) I'd rather not have it at all.

Saturday, January 12, 2008

Is there a connection between eye inflammation and OLP?

Here's another picture of the eye inflammation I get when my OLP comes along.

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