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Enbrel Didn’t Work, Now Jury’s Out on Amevive
from Veasna W.

Hi Ed!  I was on Enbrel for 5 months but my P got so bad I gave up.  It did good on the PA though! 

After reading your Jan-Feb Briefing,  I can't help but to sit here in tears.  Why do bad things happen to good people?!

Last week I finished my 12th shot of Amevive.  I had to skip one week during the course due to the severe burn from the UVB treatment.  Amevive is so slow my derm was trying to speed up my recovery.  Well, backfire!  I also cheated by using Olux on the entire body.  Now, I am 25% better. (As far as the skin condition goes, not the clearance.)  I still have P on about 75% of my body but it's manageable. Less red, less scaling, less pain, less itch (not really.) 

None of the lesions actually cleared.  I have to say that the Olux did most of the work.  Well, I am going to wait until March 15th, my next appointment, to determine if a second course is worthwhile.  The only side effect  I experienced was the intense itch and I still have it.  My blood count stayed the same the entire course which was around 650.  My conclusion, Amevive didn't clear me but it didn't make it worse either. 

I am not using anything at all for my PA.  I am starting to have painful toes and fingers again. Why can't we have just one medication that treats both the P and the PA at the same time?  Enbrel was supposed to do that but it lied to the both of us, and many others.  Take care! Veasna W.


Ed’s Response:  First, thanks for calling me “good people,” Veasna.  Before doing anything else I forwarded your email to my sister in Seattle.  I’m her “big brother” and she remains unconvinced of my “goodness” (though it has nothing to do with my P <wink>).

Forgetting my immune system for a moment, I’ve definitely decided to forgo 12 expensive weeks on Amevive.  If it works by inhibiting the same cells I seem to be suffering a lack of, obviously those cells and their function aren’t what cause me to flake.  Without them my rebound has become quite impressive!   

Boy it would be nice to have one medication that takes care of both P and PA.  I wonder if it will ever come about?  Is it likely to be a biologic?  The only thing it appears we’re learning from experiences so far with biologics is that different helper T-cells effect different people’s P in different ways.  One person’s bad T-cell might not be another’s.   I guess this is good to know.  It seems to be that P therapy based on immune system suppression is behaving like a pendulum.  Right now we’re swinging widely in both directions.  Methotrexate and Cyclosporine are at one end of the arc — both very powerful immunosuppressives that hit broad aspects of the system hard.  Now, at the other end of the arc, we have the biologics — Enbrel, Amevive, Raptiva, Remicade — that are supposed to effect only very specific functions of very specific immune system cells.  There’s oodles of evidence at both ends of the arc that suggests what we already believe, that P is an immune system problem.  But so far, solutions at either end are mutually unsatisfactory — they’re either too strong and cause too much collateral damage, or they’re too specific and don’t help enough people.  If our metaphor holds, the real solution will lie somewhere near the bottom of the pendulum’s swing.  Let’s hope the hunt continues.  -Ed

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