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March-April 2005 Briefing
Debuting: FlakeHQ Interviews
It has been a dream of mine for a long time to be able to add substantive feature articles to FlakeHQ, and the kind of feature that I’ve long thought would be most appropriate here is interviews with shakers and movers in the psoriasis community. There are lots of them, many who would undoubtedly deny their importance (some of whom may be surprised when, in some upcoming month, they’ll get an email from me requesting an interview!).
By “shaker and mover” I mean a person whose concern for or interest in psoriasis has motivated them to do something that benefits, or could benefit, lots of us. Many of these “shakers and movers” are flakers themselves, but I don’t consider that a prerequisite to being considered a prospective interviewee. A good example is any of a number of dermatologists whose names have become familiar to most members of the National Psoriasis Foundation: Doctors who have lectured, served, written books or been involved in psoriasis research. I look forward to interviewing some of these Derms.
But I’ll cast the net a lot wider, too. I’d really like to interview some of the scientists involved in research — many aren’t MDs. I’d like to interview some of the better known alternative practitioners: those who advocate dietary and other approaches to treating psoriasis. And I hope to interview some of the flakers whose voices are commonly heard in the online or offline P-communities, either because their ideas and convictions are interesting or perhaps their work touches us in other, less direct ways.
Mostly, I want to keep my ears open and not miss an opportunity to interview somebody whose light touches many of us. My debut interviewee is just such a person. On a Friday, I’d never heard of him, by the following Wednesday I’d met him on PsorChat and by the next Friday I wanted desperately to interview him. His name is Michael Paranzino. I hope you enjoy the interview.
I want to hear from you on how you liked the debut “FlakeHQ Interview” and especially any ideas you may have for future installments — email me.
Raptiva Long-term Use Study Concludes
One concept associated with at least some of the new biologic drugs is that, if the biologic works, it should continue to be taken for as long as it works — for a lifetime, if appropriate.
P is, after all, a chronic disease. Until it’s cured, it’s something we live with — probably for a life time. There are lots of diseases and conditions for which people take medicine “for the rest of their lives.” Why — short of a cure — shouldn’t psoriasis be among them? Well, there’s been two reasons: One, most drugs that might be safe enough to use in perpetuity stop working sooner or later, meaning even if you could take them forever, there would be no purpose in it. This is true for virtually all of the topicals we put directly on lesions. The other reason has to do with the systemic medications (mostly methotrexate and cyclosporine). Regardless of the fact that they work well for many flakers, their adverse side effects are too severe and years of use aren’t possible for most of us.
The biologics offer something new and unique — a naturally occurring protein that interrupts a very specific immune system activity that, in some people, results in P lesions (and other symptoms). The specificity of the action-reaction combination is probably key to the biologics’ safety. Unlike methotrexate or cyclosporine, which cause widespread modification of immune system response , and have adverse effects on liver and kidneys, the biologics — in theory at least — are the kind of drug that a flaker can take and keep on taking.
Genentech announced the end of a three-year study of Raptiva patients in February. Simply put, the study found that Raptiva continued to work and caused no new adverse reactions over time. Click here for the Genentech news release.
This study is probably not, in itself, conclusive proof that Raptiva is a biologic we can take forever. Only 339 patients entered the study and only 113 people concluded it (about one-third). Findings focus on the performance of the drug on those active in the study, not reasons why subjects “dropped out.”
Nonetheless, I’m encouraged by what the study suggests. Currently I’m in week 8 of my Raptiva therapy, and because I rebounded badly from cyclosporine before I started Raptiva, neither my doctors nor I anticipate ‘miracles’ before 12 to 16 weeks. In the May-June update I’ll post my “Raptiva Diary.”
and Enbrel Available through Medicare Replacement Drug Demonstration
If you are on Medicare and are a likely candidate for biologic therapy for psoriasis, you may want to explore the Medicare Replacement Drug Demonstration which is taking place now, through December, 2005. (The demonstration may result in permanent changes in Medicare.)
ever-more-popular biologics, which are taken once a week as subcutaneous
do-it-yourself injections (like insulin), are quite expensive ($15,000 per
year is the nominal figure
tossed around). So, everyone
is excited about them being added to the Medicare demonstration.
For more information, read the National
Psoriasis Foundation report on the issue.
New Poems in Flaker Creativity
Two new poets are debuting this month and a brand new addition from Sherry S. Be sure and check them out at the top of the list in Flaker Creativity.