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Dovobet Rebound with a Vengeance
from Steve

Hi Ed:  First of all, it's a shame your site has had to drop to 2-month update status — but I'm sure you're a busy guy, plus your site is free and such a huge help in coping with this damn self-solitary-confining disease.

I've never accepted it and have fought it all my life, over thirty years now. You name it and I've tried it — it's so damn frustrating.

Now like many other sufferers, I sit and wait for the 'release' of Amevive.  I hope it's all it's cracked up to be.

I was writing in response to Vix, and her reaction to Dovobet. I've had the same problem, great initial response, but when it decides to come back, look out, because it returns with a vengeance, I haven't been this severely covered in years. I'm now desperately trying to get my P back under control.

Anyway, enough negativity, great site Ed, thank you so much. –Steve E.


Ed’s Response:  Thanks for writing, Steve.  I sometimes feel sorry for myself, for the 13 years I’ve been combating P.  Hearing from someone who’s been in battle for 30 years is humbling.

Treatment rebound is, as far as I’m concerned, the number one worst thing about having P.  It’s not a matter of severity so much as apprehension.  In anticipating the anguish of a rebound flare we make it worse.  We mentally suffer far in advance of our physical suffering. 

This problem is exacerbated by drugs that work but which we know we can’t take forever.  In my case, cyclosporine has been the most effective drug.  Only while on a cyclo regimen did I achieve complete clearing of both skin and arthritis P.  But because I knew I could not take cyclo forever, I did not change my wardrobe during those seasons without lesions.  As tempting as it was, I did not buy short sleeve shirts or shorts; I did not go sockless in my sandals; I did not forgo the broad-brimmed hat that I always wear outdoors.

And fear of rebound turned me into a stubborn, insistent patient.  I wanted to taper off one med while starting a new one.  I was in all ways unrelenting in my fight to avoid a rebound flare.  And I was successful when I migrated from methotrexate (MTX) to cyclosporine.  Less so when I migrated back from cyclo to MTX.  And failed miserably when I faded out the MTX at the beginning of my Enbrel regimen.  As I write this I am three months into my Enbrel regimen, experiencing my worst flare in four years, and am giving up on the Enbrel even though I had hoped to keep trying for another three months.

Have you started an Amevive regimen?  Do stay in touch.  -Ed

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