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Friday, December 31, 2004

Then, I went on the dexamethazone paste again, no effect.
did Sea Salts (several different kinds) for outer skin LP
then Aveeno bath powder
then Lidex (helped a little on skin)
kept out of sunlight completely
GelClair for mouth (used by cancer patients)
Tea tree oil shampoo
some kind of asthma puffer for mouth (cant recall the RX name)
Zinc shampoo
Tar shampoo
Began to see a different dermatologist.
Peroxide based soap
Protopic
Biotene toothpaste and mouth rinse (burned like H, they have peppermint in them!!!)
Steroid injections directly into the tongue and scalp lesions
That doctor even put wart remover on my tongue (JERK!!!) and suggested I chew tobacco! (Double Jerk!) But, I never did that one. I read so much about tobacco, especially chewing tobacco contributing to mouth problems including OLP. He is also the one who said it was caused by my sleeping with my mouth open, so I used a dental mask to keep my mouth moist. Then, he said it was caused by having GERD and ordered Prilosec. That just gave me a really bad case of acid stomach. Went off that.

Tried Protopic again, but it stung so bad by this time that it was worse than Bee Stings. I had been able to use it before but with little effect. So pretty much eliminated everything after that except that's when I went totally hypoallergenic everything, laundry soap, etc. and double-rinsed my clothing in the washer. My water bill soared! Incidentally, about this time a mold grew on the wall in the bathroom and landlord had to come in and eliminate it. (Now there was some stress!)

Began to use Astragulus and Myco-Mushroom product and acidophilus tablets to build immune system and applied lots of aloe vera juice to skin. That was very soothing. But, couldn't tolerate in my mouth. Did feel better in general from those, but no effect on LP or OLP

By October, finally referred to seeing the Stomatologist at UCSF
Began Dexamethasone rinse (has cinnamon oil in it!!!) Cinnamon is NOT good for OLP.
Also anti fungal lozenges, which I couldn't even suck on. They just sat there painfully glued to my tongue, or the roof of my mouth. They were very dry lozenges. I wish they had softer ones. I would prefer them to taking anti-thrush medicines. It got so bad that I could no longer tolerate brushing teeth with my baby toothbrush, or even swish my mouth with plain water, except by the teaspoonful.

After a month of that I begged to have more aggressive treatment. it took her a couple more weeks to decide to follow through with the internal prednisone and fluconozole, and now can suck on the lozenges successfully. Even ate a piece of toast today!!!

Also, I am now using the Clobetasol directly on lips, tongue, gums and buccal area all the way back to tonsils. Hurts like Hell when I first apply, but well worth the pain and drooling.

Incidentally I use melatonin liquid to help me sleep. It's not necessarily the pain that keeps me awake. I just have a sleep disorder, which I suspect interferes with my well-being and adds to the stress that everyone seems to think can cause OLP.

I was told years ago that I had Lupus, then tests were negative. Always when I had a flare up, prednisone made me well. Hated taking it but was so sick and desperate, I was glad I did. Also have been told I have Sjogren's, but recent testing at UCSF says no. It's weird. All I know is I have some sort of unidentifiable Auto-immune disease. This last year was pretty frightening. I am glad I am better, too.

Well, I think I might have repeated myself. But, this was in response to questions from a friend who wanted to know all the alternatives I tried. I just got to say, some helped, but none cured or reversed my OLP at all.

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