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Friday, July 30, 2004

Topical Treatment for OLP

Someone asked for clarification on the use topical medicine. I slather it on and around the inside of my mouth with my finger. I don't eat or drink or anything for a long time after using it, or even talk. This way, it will have a little bit longer chance of doing some good. I have noticed when I apply it regularly that there seems to be some improvement, but then, it seems just when I think it is going to be okay it starts up again.

I can barely tolerate to brush my teeth. I have a baby's toothbrush and gently use that. I know it is imperative to be dentally diligent, but the more I mess with my mouth, the worse it gets. So sometimes I just can't tolerate brushing or even rinsing out my mouth. I feel trapped.

Saturday, July 24, 2004

Familial OLP?

I wonder if this sort of thing runs in families. My niece and her daughter both have a skin condition that has been called everything from fungus to psoriasis. So far neither have anything in mouth or scalp. And my son, today, tells me he has a mouth infection. I asked him what, he said he talked on the phone with his shrink who suggested it was "thrush". He has yet to make an appt. My older brother has dealt with something like this since his twenties. A recent conversation with him, he tells me it is around his ankles and lower legs, and in the groin area. He believes it was caused by living in Florida where it is very humid. He thinks it is a fungus and treats himself with over the counter "fungus medicine". I'm not sure what he means. I suggested he go to a dermatologist to have it biopsied. He said he has seen one, but nobody did a biopsy. I doubt he will go.

I think part of my problem in getting sufficient treatment is that I live in a small town and the dermatologist I have seen for years just doesn't know what to do with me anymore. She gave me over to her partner who thought it might be cancer. He referred me to an oral surgeon for a biopsy. It is not cancer, but OLP.

I looked up Clobetasol which is something I see if my doctor will write an RX for Clobetasol to treat it.

It's also known as Temovate, and I would be getting it in the "topical" form, an ointment that I will rub into the inside my mouth.

I wonder...I have always had bouts of alopecia areata since I was a teen, and a few months ago when these sores appeared on my scalp I had a break out of it then. The hair has come back scanty, but so far, has come back, as it always has through the years.

I feel so frustrated by this situation. I have coped with many things in my life, (bonecancer, for example) but this is ongoing and insidious, and hard to ignore. I don't like to go out in public anymore for fear of having to deal with anyone. It is such an effort to socialize when I feel like I am on fire (in my mouth, on my scalp, lesser degree on my shoulders). Plus, if there is food involved, people just don't get it when I am so particular about what I order to eat.

Well, here I am... whining. I know I am depressed, but so far not pulling myself together very well. I do know there are lots worse could happen.

Thursday, July 22, 2004

White Lacy

I have been in misery for many months. I have had "these little sores" on and off for years, mostly just in the skin around my shoulders, neck area.

Then, about 1995 had a bad episode with my tongue peeling which went away in a few weeks. Then ever since then, I had the white lacy stuff on the inside of my buccal mucosa. At the time it was biopsied and I was told it was Lichen Planus and was given an RX for the dexamethosone with the waxy base, which I have used periodically since then. The ones on my shoulders were not identified as anything. I was told I was a "picker" which made me mad because that is not the case at all. I now understand the two are related. The last few years in January after my annual Eye appt. my right eye would flare up really bad and these mouth sores and skin sores would get worse, but this year it has been constant and worsening.

A couple times lightly in the scalp. But, last winter everything went haywire all at once.

I now have huge sores over the top of my scalp, as well as under, alongside, and on top of my tongue. Eating is painful. Even toast is hell. So everything must be soft, smooth and bland. Too much chewing is abrasive to my tongue. Sorry for sounding like a wimp with all this complaining. But I am so fed up. I cut my long hair off very short as I was tired of trying to comb the scabs out, plus I was worrying that maybe shampoo residues and scalp sweating would contribute. Now I am at the point where I am ready to shave my hair off. I am 59 year old. This is not going to look cute.

Presently I am using protopic ointment on the tongue, which sort of keeps it from worsening, but doesn't make it go away completely. Also have to use lidocaine gel for when the tongue is burning too much. It hurts so bad sometimes, right down my throat. I get shaky from the pain. This is my own fault as I have dared to eat something not completely bland and by the time I have had a few bites, and discover there are hidden spices, it is too late.

I am using cyclosporine eye drops for the huge redness of the that flares up with this. Before, I was using prednisone eye drops but the new eye doctor said that was very bad to take Econopred.

I am using Lidex on the sores on my shoulders, back and neck.

As long as I slather these on religiously I can keep things at bay. But, so annoyed that with medical science supposed to be so advanced there is no apparent known cause or cure for this. Just a whole bunch of lists of maybe this and maybe that.

Interestingly, I have noticed that most of the medications that are suspected to cause lichenoid reactions are many of the same ones I have already proven to be allergic to, and are suspect for causing drug induced Lupus.

Thursday, July 15, 2004

Gums and Lower Lip OLP


All this lacy striation stuff forms and it gets a bit sticky to eat anything that is dry or crunchy.

It's very painful to brush teeth. Flossing with waxed string is not tolerable at this point. Those little plastic picks can not do a good cleaning job.

Mouth swishing with warm water is about it.

My outer cheeks are all red. They feel as if sunburned.


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