Questionable Prescribing by Obnoxious ex-Derm
Dear Ed: Thank you so much for putting my cry for help out to everyone and for allowing me to vent to you and my fellow Flakers [A Helpless Case?]. I thought I'd write back and provide some more history on my personal plight.
My now-ex-derm took me off Ultravate because she wasn't sure about the long term effects. I can understand that except I wasn't taking it on an extreme "long term basis." I used it once or twice a week every 2 or 3 weeks and only about 4 months out of the year. It got rid of the scales and some of the redness, and worked beautifully when followed up by a Dovonex and baby oil cocktail the rest of the time. When it came time to renew my Ultravate prescription she cut me off, and, yes, after a nice, long remission last summer, the P rebounded with a vengeance because I didn't have the pharmaceutical to fight it, nor did my derm even suggest putting me on a transitional prescription or series. Forget going to her office and bringing in all the literature I read about various prescriptions and treatments from the NPF and the AMA. She was so closed minded that I couldn't get any of the info in front of her to read or review. I was never tested for damage or side effects from the steroid, and I have not recognized any. To put it lightly, they weren't killing me, there's no evidence they were killing me, and I'm pissed.
So, now I'm back to square one. My prescription for Dovonex expires this month, I have only 1 refill left (which is fantastic at the low, before-insurance-reimbursement price of $90.00), and I am currently derm-less and struggling to find a new doctor. Unfortunately, I still haven't been able to pick myself up out of this major funk.
My theory about where I lost my strength is this: around 21, I finally found a derm who made the correct diagnosis, and since I didn't know anything about P at that time, the gravity of the situation hadn't hit me. As I began to read and learn more, the full weight of it hit me like a brick wall and I realized how abnormal my life would be. Also, I began the Ultravate-Dovonex treatment after my diagnosis and the P cleared up fantastically for the next few years, with the exception of the usual winter explosion. I dumped the diagnosing physician because he had the personality of a lima bean, and hired my next derm. The summer of '96 hit and the P didn't go away so easily. Not a swimsuit nor pair of shorts graced my body that summer, and I really hit the dumps because I was so used to "remission" this explosion crushed me. I haven't been able to get the strength and self-esteem back, nor been able to channel the pain either. Thank God I have a great support system otherwise I probably would have gotten myself into an unhealthy dependency. My boyfriend and I have talked about attending a meeting of the Chicago Psoriasis Network to listen and talk to others, but I don't draw strength from sharing my problems openly and "in the flesh." Knowing this about myself, the group experience would hurt more than help. Maybe over time my feelings about that will change.
I'm one of those people that on the outside appears to have it all together: strong, confident, accepting of my situation, taking things in stride; when I'm alone and no one else is around, I feel like I'm falling apart and I hate myself.
I will be turning 26 at the end of May, and instead of looking forward to the Memorial Day weekend to barbeque and celebrate, I'm hoping and praying for a famous sunny Chicago cold front to hit so we'll all be sitting on the patio enjoying the 52 degree weather.
My fellow flakers, take heed: summer is coming. Try to keep your heads up and don't let it hold you back like it does to me. Continue the good fight and try to get a good support system behind you. You are all in my best thoughts and wishes. Especially you Ed! -Suffering in Chicago
Ed's Response: Learning more about your derm history doesn't mitigate my anger. Still sounds like your now-ex-derm should be throttled. E-mail or call the NPF for a derm referral in your area. It shouldn't be hard to "make an upgrade!"
Here's something else you need to do. You need to order the videotapes of the NPF 30th Anniversary Conference from last October. I've been watching them, a few minutes here and there, over the past several weeks and they've helped me (see this month's Briefing). I think they would help you out of your funk: If for no other reason, because they illustrate real people with real foibles getting a handle on this thing called P ... wrestling with the demon personally and professionally and, though perhaps not WINNING, exactly, at least surviving the skirmishes to bring back intelligence and stories. Most importantly, these people project a sense of control, a sense of "dealing with it" that is both sobering and inspiring. Just the kind of message you need to hear when you are alone and feeling like you are falling apart.
In the meantime, good luck and stay in touch!