May-June '04 | briefing | mail | don't say this | flakers' jargon | flaker creativity | articles | other places | archives | send mail | ed dewke | legal stuff | order | search | PsorChat | PsorChat Review | 2004 Ed Dewke

Apprehensive About Enbrel Trial
from Samantha T.

Hi, You have a wonderful, informative site and I just want this opportunity to say hello and to thank you for maintaining the site.

I was diagnosed with PA over 15 years ago.  The P has gotten increasingly worse over the years while my A was in remission after I started a serious exercise regimen in 1996 or so.  After I stopped jogging in 2003 on advice that impact exercise will further damage my degenerating lumbar disk, my arthritic pain came back in full force.  In Nov 2003, my left ankle, foot and leg became swollen and then became severely painful.  I ran to a cardiologist to make sure it's not my heart.  Then to a rheumatologist who wanted to put me on Enbrel.  Since I am not keen on injections we settled on 7.5 mg of weekly MTX.  While the swelling is gone after 4 months, I am still in enough pain to affect the way I walk.  I am 54 and I walk like I'm 90.  My dermatologist is starting a clinical trial of Enbrel and I am a perfect candidate.  I'll be doing 50 mg, 2 times a week.  I think that's double what you [Ed] started with. 

Any advice or wisdom you can give would be much appreciated.  The trial starts 5/11!  And I'm still unsure what is the right thing to do!  Despite being without MTX for 3 weeks now, my pain has not increased and has even lessened on some days.  It's all a mystery.  My P on the other hand is getting worse.  What I've read on your site has been that Enbrel was not so effective on P for most.  (I looked at only the first 30 hits.)  What's the percentage of success stories from your readers?

Thank you for listening. -Samantha T.


Ed:  I hope you’ve gone ahead and started the Enbrel trial, Sam.  Though a lot of the early posts here about Enbrel were negative — and we still get reports from Flakers who, like me, have found Enbrel disappointing — the percentage of success stories is significant and growing larger every day.  Many more satisfied users have left their impressions on PsorChat and it may be worth your while to browse through those messages when you have some time.

There has been considerable off-label use of Enbrel at 50 mgs twice weekly, though the standard prescribed dosage is half that, as you pointed out.  It would appear the trial in which you are participating (I hope) is intended to provide some credible statistics on the efficacy of Enbrel — at least at the onset of therapy — at this double-dose level.  In retrospect, I wish I had started it at 50 mgs twice weekly.  I used the 25 mgs twice weekly for my first three months on Enbrel, then it was upped to 50 mgs.  By that time my body might have already said oh hell, ignore this stuff.  Starting out at 50 might have shocked my body into a better response early on.  (I use the expression “shock” very figuratively.  One of the benefits of Enbrel, like the other biologics, is its subtle effect on the immune system.  The way I understand it, even at a very strong dose there should be little or no effect beyond its intended interference with specific T-cell functions.) 

Let us know, Sam, if you started the trial and how it’s going if you have.  -Ed

This Month's Mail | Archives