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Hey Ed, it's me — Ray S. aka Stealth. I wrote and sent you our anthem and I see it's still on your site. That's great, thanks.
Just to let you know, I discovered a very consistent “control” for my P. Some years ago, I purchased some six foot UVB tubes (with my Derm's 'script of course) and fooled with them in a less than enthusiastic way and gave up on them after a few weeks. Four years ago I moved and I needed a place to store these two six foot fixtures in my new house. I had a couple of really small closets on the 2nd floor and decided to stuff them in there because the tubes cost $100 a piece I didn't want to break them, just in case I ever decided to try them again.
Well one day, after being on Cyclosporine for two years (my Derm thought it was only one year, fooled her, right) I was in a nominal state (not flaring but stable with a few stubborn spots here and there) I noticed some P developing on my face. I got this bright idea that maybe I should try some UV light on my face. So I set up those lights in the closet (which is about the size of a home treatment booth) and decided to give it a shot. The very first time I decided to try it I said to myself, what the hell, I'll just go in there and go naked, if it does anything for my face maybe it will have an effect on the stubborn spots.
Ed, I'm telling you, the shit started to FALL OFF IMMEDIATELY! I could not believe it! In 24 hours I was starting to clear. My derm (who is now quite the celebrity — she is the regular derm on the TV show "Extreme Make-over," her name is Ava Shamban — she bought the practice of Nicholas Lowe some years back. Lowe is also world renowned for his books, research, and teaching at UCLA — gave up private practice to go back to research) was not aware that I made this experiment. When I went there for my next exam she was stunned and asked me what happened. Anyway, she gave my experiments her blessing, told me how to progress up to 8 minutes per day and I confessed to the two years on Cyclo which alarmed her. I told her it was making me sick, very sick — vomiting in my sleep sometimes — dangerous stuff! So she put me back on Soriatane (low dose — 25 mg every other day) along with my home light treatments. This was working great for four years or so.
I got some hype from Biogen in the mail after seeing their site on the Web. Decided to ask the Derm about letting me try the Amevive. Long story short, after twelve 130 mile round trips to the derm to get the shots and the blood tests, not to mention the vacation time I burned doing it, and bills to Blue Cross in excess of $15,000, six weeks passed after the last injection and my P was flaring. Unbelievable! You guessed it, I hit the lights in my upstairs closet for a full 8 minute treatment one time, a week before returning to my derm for follow-up consultation. Oh yeah, I got French-fried! But two days later the P was arrested. Red is dead! I am totally clearing — again — thanks to the lights.
Sorry for the rambling but I just have to tell you one more thing about Amevive — I am generally a healthy person, except for the P of course, but about 3/4 of the way through the Amevive treatment course, about mid January, I came down with a cold, virus, whatever the hell it was, that I thought was going to kill me! After about 3 weeks I thought it was going away until I woke up with a fever that hit 103. That was the beginning of a second “cold” that lasted another two weeks, and a week after that one was subsiding, I got a third “cold,” sinuses and upper respiratory this time. Today, March 20, I THINK I'm starting to feel well again. Bottom line: Amevive did nothing for me except make me susceptible to “bugs” that normally don't bother me.
By the way Ed, I don't know if I ever told you this or not, but some years ago I was a study patient for a biologic that was then called "Anti CD-11a" that also did nothing for me. I begged to get on that study because Dr. Lowe was pulling me off of Cyclosporine because I was on it too long (first course of that treatment). I have some horror-show pictures (Polaroids) taken over the three month period that I went cold-turkey off of the Cyclo and onto the Anti CD-11a infusions. Anyway that Anti CD-11a is now marketed as Raptiva. Isn't that wonderful?
Haven't tried Enbrel yet (another $15,000 treatment). Wanted to try it when it was first OK'd by the FDA but my lady derm thought it best to stay with “what is working for you now,” and stick with the lights. Now — after the Amevive failure her PA tells me that Enbrel is all the rage, they even use it on young kids she says, they even brazenly advertise it on TV out here in California. The ads don't say it might work, they imply that it WILL WORK. I don't know Ed, I've gone through two strikes at the plate so far, maybe Enbrel would be a home run for me but I can't help thinking it would be just another swing-and-a-miss, strike-out for me.
Again, sorry about the rambling, but I haven't talked to you in years so I thought I'd bring you up-to-date on my situation. I sincerely hope all is well with you and your struggle with P. It certainly robs us of a lot of our valuable time and as the old magazine ads used to say, it is truly the heartbreak of psoriasis. Dislike the ad or not, we victims truly feel the heartbreak.
On your site, I was reading the info on the new fellow Paranzino. Very interesting, when I get some more time, I'm going to check out his site.
Oh yeah, thanks for keeping up your site, by the way.
Last but not least, I'm tickled to see that you still have the “anthem” and it's still posted!
Take good care Ed. -Stealth
Ed’s Response: It is so great to hear from you, Stealth! After my little “scratching man logo,” your Anthem is the second oldest Flaker Creativity item on the site (making it second from bottom on the list). I remember well the day I first read it. I read it, then I sung it. Were I not laughing so hard I’m sure I would have stood at attention. Surely one of the reasons FlakeHQ has been around so long (next year will be our tenth anniversary) is because early on we became “official” by your creation of our own National Anthem <wink>.
Your story — which for us was a retrospective of your missing years — was fascinating. Your experiences have been similar to mine in some ways. I, too, have found Cyclosporine the most effective systemic to control my psoriasis. I, too, had a disastrous first experience with a biologic (Enbrel). They wouldn’t let me try Amevive because my CD+4 count was way below normal, and it works by suppressing CD+4. What does that tell you about my P? It must not have a lot to do with my CD+4 count, because I was flaring when they determined the count was too low. By all the chatter I’ve heard, Amevive is losing favor among the biologics-savvy flaker population. Apparently best results have been obtained by the office-infusion administration method and now that’s been done away with in the U.S. in favor of IM injections — or so I hear. Where our experiences diverge is sunlamps and Raptiva. I never tried home phototherapy, but every attempt at derm-office phototherapy came to naught, primarily because my nearly pigment-free skin fries in seconds of exposure. My derm had to discontinue every attempt because I cooked long before I’d received enough exposure to palliate the P. I’ve had fifteen weekly injections of Raptiva so far — fourteen regular doses and one “conditioning dose” at the beginning — and the Raptiva has beaten my Cyclosporine rebound and appears to be gradually dispatching my lesions. I expect to post a full report on my Raptiva experience in the July-August or September-October updates here.I hope you’ll visit a little more often than once a decade, my good lyricist. You’re words are refreshing even when they don’t rhyme! -Ed