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Fed Up and Laying off Meds
from Mark

Hi Ed.  It's been a while since my previous mail to you. The last time was about Dovonex (Dovonex Experience). I'm a 36 year old male working in IT.

Well, my P has been getting slowly worse over the last year or so and in the end I just got so hacked off with treatment costs (and visits to my doc) that I decided it was time to stop wasting money (and time). I quit smoking too, but this doesn't appear to have had any impact. I haven't used any treatment for a while now and the rate of spread is no better or worse. I'm not saying you shouldn't use medication, it's simply a personal decision for myself. I've reached the point where if I can put up with it then so can everybody else. If they can't, it's their problem. I remember a few years ago, a female colleague of mine asked me to stop flaking "because it makes me itchy"! Ooh, yes please! To be fair, my current colleagues are a good bunch. One of my female colleagues has made it her mission to teach me all about moisturisers (which is the only thing I bother to use now).

Did anybody see a film called Ghost World? A friend lent it to me on DVD. I found it fairly boring until Steve Buscemi's character was revealed to be a dysfunctional social misfit by the presence of a P newsletter in his letterbox. I didn't pay much attention at first — until I realised that this was perhaps suggesting P is only associated with losers. That got me a bit miffed. Hey, here's an idea — why not add a page of celebrity flakers?  Perhaps you could 'out' them!  -Mark (Plymouth, England)


Ed’s Response:  I’ll take the idea about a page for celebrity flakers under advisement.  (But don’t hold your breath.  I can count the ones I know about on one hand.) 

I haven’t seen Ghost World, but your mention sent me to where it is available and briefly synopsized.  I think I WILL try to rent and watch it. 

A couple of times over the past decade I have reached the point you describe, where I am “fed up” and just “quit everything.”  And I, like you, have been startled when doing so had no dramatic result.  What that suggested to me was that I’d “worn out” my treatments.  They’d lost their effectiveness and I really was wasting money and time. 

To combat that situation I started a cyclical regimen of treatments (all topical — this was before I started taking systemics) and that worked much better.  In the cyclical regimen I would not use any one product for longer than a single “tube,” then I would switch to another goop. There were three or four different goops I would use in succession, then I’d start over again. This appeared to keep my P on its toes. 

But in retrospect, even that must have eventually become ineffective because I WAS compelled to try the systemics.  First methotrexate for a year, then cyclosporine, now back on methotrexate but waiting for Enbrel or Amevive.

I really liked not having to goop-up for a couple of years.  Now, second time around on methotrexate, I’ve evidently run out of luck.  I’ve enough lesions stubbornly ignoring the MTX to force me back to daily gooping.

If you wish, Mark, you may write more often than ever two years!  < wink > -Ed

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