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Amevive Advocate
from Mike R.

Ed:  I was doing some research on Psoriatic Arthritis and came across your web page today.  Nice to see some humor associated with a disease that has afflicted me since my teens (I'm 57 today).  I think far too often we can get sidelined in our conditions and not see any hope whatsoever.

I thought I would share with you my recent experiences (last 3 or so years) just as an FYI with the intent of saying that help is on the way.

Nothing I have ever tried has done a single thing to remove my psoriasis.  Nothing. Not PUVA, steroids, coal tars, ointments, salves, creams, systemics — nothing.  The psoriasis slowly progressed to the point where I was bleeding through my white shirts at work and rushing home after work just to stand in a scalding hot shower to stop the incessant itching. (The palliative effect of the hot shower lasts for about 3 to 4 hours but plays hell drying out my skin.)

My dermatologist, here in Atlanta, asked me if I wanted to be a participant in a Biogen Corporation Amevive study a couple of years ago.  I said yes and began injections a couple of years ago. 

Of course as luck would dictate I would get the placebo first and get no relief at the outset of the trails.  After the placebo stint for 3 months and then the wash out period for another 3 months I started getting the real stuff (Amevive).  First 3 months no real change, then 3 more months of wash out and then Biogen decided to cancel the study early saying they had enough information to proceed to FDA approval. 

Now this really pissed me off.  I wrote to the Biogen Board of Directors, every VP in the company, all senior directors and challenged their Hippocratic Oath, nicely and professionally of course.  To my surprise I got letters back from the president and chairman of the board and others saying my letter had been read in board meetings, thanking me for my interest and claiming that, based on my letter, they were reinstating the program.  It looks like the squeaky hinge does get oil after all.

Well after another 9 months they finally got the program re-started for the 500 volunteers across the country and followed through on their promise to provide the medication to us until such time as it became available on the market. 

Now here's the good part, after a 3 month weekly injection period, followed by a 3 month wash out period and then 2 months of injections the psoriasis which had covered over 80% of my body was COMPLETELY gone.  Not a single lesion remained, no more finger nail separations only some scars from where the lesions had been.  I started wearing a dark shirt and bought some short sleeve shirts.  I even cut off some slacks, made shorts out of them and paraded around in the winter in shorts.

Unfortunately, I had to voluntarily withdraw from the study since I began developing severe Psoriatic Arthritis and could not mix Amevive and other drugs and stay in the study.

Well, that's about it.  I understand Amevive will be approved by the FDA and on the market in early 2003. I strongly recommend it.  (By the way, I am not a paid spokesman for Biogen.)  The drug really works.  It does not cure Psoriasis but it can control and did remove the symptoms completely (for me).  After I withdrew from Amevive I had a resurgence of psoriasis lesions in about 6 months. 

I am now 1 month into using Enbrel for the arthritis and am waiting to see if it will have the same effect that it has on others of helping with the skin lesions also.

If you wish to share this with others, please feel free to do so.  It is the only thing which has had any impact on my Psoriasis in over 35 years.  Sure hope it works as well for others. 

Take care, a fellow flaker, -Mike R.

*****

Ed’s Response: Great report, Mike.  Thanks so much for sharing it.  As I’ve been saying in my Briefings over the last few updates here, I would have jumped at Amevive, first, had it beat Enbrel to market for P.  As it stands, Amevive is still just about to be approved.  Even though Enbrel kept us waiting for a year — a fact that got me lathered up in those Briefings more than once — they still beat Amevive to market for psoriasis. 

While I was prepared to start either regimen — whichever became available first — I did not realize Amevive would not help psoriatic arthritis.  The only drug I have taken that had any durable palliative effect on my PA has been methotrexate, and my eagerness to start using either Amevive or Enbrel was motivated in part by my strong desire to stop using methotrexate (MTX).  MTX has controlled my skin lesions but never completely eradicated them.  But I would put up with the few recalcitrant lesions in order to be free of the nearly debilitating joint pain.  I don’t think the converse would be true:  I would not be willing to live with joint pain in order to be free of skin lesions.  Would I have been happy using Amevive if it meant I had to take MTX at the same time to control my PA? 

Well, it doesn’t sound like I would, but maybe, if Enbrel works for me, I won’t be faced with the issue. 

But I hope those with severe plaque P — and especially those without PA — will take your testimony to heart and think about Amevive.... Which, we are promised, will be available any day now!  

I'm going to remember your story and point anyone/everyone to it who believes drug study participants are "merely guinea pigs."  You referred to yourself as the "squeaky wheel."  I think your actions better qualify you as the uninvited but persuasive corporate conscience.  We all owe you our thanks.  -Ed

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