Saturday, April 19, 2008

I wrote the following to a friend I met on myspace who also has Lichen Planus:

I usually take anti-fungal meds, like diflucan because when I am flared up I have thrush as well as LP. Plus, if I am on prednisone alone, it seems to create a welcoming committee for the fungus. It used to be one med for a while then the other. But, we finally figured out I have to take both at once.

I used to take Nystatin swish, but told to stop taking it because there is sugar in the ingredients! And sugar feeds candida, thrush, fungus, whatever.

I always felt the swishes were a waste of time and money too. I guess some people have milder cases and it works for them.

The next step is to put me on a clinical trial. But, I have to be completely free of any cortisone-like meds including one of my asthma meds. So, been off them a few weeks and back to horrible OLP, and that is why I put myself right back on the prednisone. I have a follow up appt soon, and I know she will understand.

I couldn't get on the trial when it was all flared up again (and I couldn't wait any longer) because the doctor who was doing the trial was away. Due to spring break? I guess.

So, I don't know if we are going to try again or not. I hope so, because the medication they are testing will have a lot less severe side effects than the usual LP meds.

The next step, if I don't go on the trial, or if the trial medicine fails for me, is to go on a medicine called Cellcept. At least that is what has been suggested as a possibility. I understand that I would have to be on it for about 8 months and stay on the prednisone quite a bit during the same time.

Cellcept is used when people have liver transplants and such. The problem is that then I might become more susceptible to all kinds of stuff, just like a transplant patient would be. One advantage I think I might have is that my regular doctor's partner is on Cellcept and he is doing well. Plus, she says she will arrange for he and I to get together and talk about it, if it looks like my next option is the Cellcept.

I really want this trial med to work, though.

Erosive Oral Lichen Planus

Tuesday, April 15, 2008

The Oral Lichen Planus was a mess again. It's not just my mouth, but all of me feels so sick, walking was terrible.

I wasn't going to wait for the trial. So, I am back on the prednisone which makes me want to do anything but sit still. I have seen corners of closets and cupboards I forgot existed. A good thing too. A charity is coming around on Monday and carrying boxes away. Yay!

I can walk better again. No more arthritic pain. I have more stamina, can stay standing longer, bending stooping, lifting, even a visit to the pool for gentle exercise... It all feels surreal to go from feeling practically crippled to this again.

Life is full

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