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May-June 2007 Briefing

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In This Briefing:
A Biologics mini-Retrospective
FlakeHQ Interviews Our Poet Laureate

 

A Biologics mini-Retrospective 

Biologics for psoriasis are a “new millennium” phenomenon.  Though mentioned earlier, we really began to talk about Enbrel, here at FlakeHQ, in 2002 (see August 2002 Briefing, and October 2002 Briefing).  Summing up, we’ve had four complete years of biologics availability to treat psoriasis (starting with Enbrel, but followed shortly thereafter and in rapid succession by Amevive, Humira, Raptiva, Remicade and more in the pipeline).  Many of us have been using some of these biologics considerably longer either because (a) we were part of drug trials, or (b) we had other conditions, such as rheumatoid arthritis, for which one or more had already been approved. 

In spite of high prices, complex administration, and weird pharmacology, the biologics have been heralded within the flaking community as “the greatest thing yet” for subduing skin lesions and P-arthritic joints. 

What we’re reading today, at FlakeHQ and elsewhere, suggests our honeymoon with biologics might be over.  Here are some observations distilled from our four years of experience with — and correspondence about — biologics:

  • Individual response to the palliative power of any biologic is hard or impossible to predict.  Like with EVERY OTHER drug used to treat P, no one biologic works for everybody.  Responses to biologics appear to run the same broad gamut: from “no help whatsoever,” through “some but not complete improvement,” to “complete disappearance of all evidence of P.”
     

  • In the U.S., biologics are the most expensive “drugs” available to treat P and PA, averaging about $15,000 per year.  And I’ve seen no indication that prices are likely to drop.  (Biologics don’t face the same eventual threat of competition from “generics” that other medicines do.)  Many manufacturers have programs in place to help the uninsured “afford” their prescription, so the high price isn’t necessarily a “brick wall” for the uninsured.
     

  • Regardless of how well the biologics do or do not perform, a rebound flare is often the consequence of stopping use.  Several correspondents here have reported the worst flares they’ve experienced when they stop using a biologic.
     

  • For some people, the biologics “wear out.”  This is expected from topicals and sometimes from non-biologic systemics (methotrexate, cyclosporine and acitretin) but the initial promotional hype from some of the biologic manufacturers led us to believe the benefits would endure as long as we continued to use the product.  As far as I know, no one has carefully studied the facts surrounding cases where biologics stopped working, so conclusions as to “why” would be speculative.

At this point, four years into “life with biologics,” we are beginning to get an accurate picture of how these drugs perform “for real” — which is not to suggest we give up hoping the next biologic out of the chute will be BETTER than all the rest and perhaps really be a “wonder drug.”  We owe it to ourselves to remember that biologics so far work to inhibit processes that result in lesions and, in some cases, sore joints.  They don’t purport to dismantle the root cause of psoriasis — which means they are NOT a cure.

I’m currently trying my third biologic, Humira, after having spent a year each on Raptiva and Enbrel.  None of these drugs has improved my skin to the extent that six months on cyclosporine can, but they’re all less poisonous than cyclo, and I’ve had no side effects from them, unlike cyclo which does, for me, come with adverse side effects.  I have high hopes for personally continuing to use biologics — at least as long as I’m insured.  They’re not a miracle, but they are definitely a step in the right direction.

 

FlakeHQ Interviews Our Poet Laureate

Individuals contribute to our communal ability to live with P in all sorts of ways and, for the past couple of years, I’ve followed the obvious paths and interviewed folks who are pace setters in medicine, science, politics, advocacy and communications.  This update I’ve stepped off those obvious paths to spend a delightful time with Sherry Sheehan, who happens to make art out of her “need to cathart” about being a flaker.  Those of you who visit the Flaker Creativity page on this web site have seen “Sherry S.” associated with quite a few poems (16 to be exact) accumulated across several years.  Go to that page now and you’ll see a large hyperlink to a “Sherry Sheehan Page” from which you can access all of her poems at FlakeHQ.

I think aesthetic expression is a critical component in any human culture, and we who flake are a sub-culture, so it’s important here, too.  I really enjoyed being able to ask Sherry questions about her P and her P-poetry and, as you’ll see when you read the interview, Sherry enjoyed herself, too. Links:

Directly to the Sheehan Interview
FlakeHQ Interviews (home)
Sherry Sheehan: FlakeHQ's Poet Laureate

 -Ed

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