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Used Cyclosporine for One Month Only
from Ria

Greetings Ed, and flakers all – I’ve been catching up on all the briefings, interviews, and mail as it’s been awhile since I visited FlakeHQ.  When I last wrote [Coping with Rebound], I had given up on all the treatments, and was using lotion only.  God, life is simpler that way!  Unfortunately, my P got worse and worse.  After a 5 year absence, I went back to the derm for a one-month supply of Cyclosporine.  My skin cleared in a month the 2 previous times I had used the drug.  While my skin didn’t clear completely this time, I wasn’t flaking everywhere.  That was the payoff!  Also, there was no nasty rebound as before, when I had used the drug for several months at a time.

This doc was “brand-new” when I first went to him.  He’s had time to learn more and develop a much better bedside manner.  He eagerly shared all the “new” treatments available – nothing I hadn’t already learned about, and had decided against using.  But I did find myself being talked into using Enbrel.  It’s been a month and nothing terrible has happened.  I’m not expecting miracles, but I’ll see this through and hope for the best.

Ed, your interview with Dr. Pagano was quite interesting.  Usually, my eyes glaze over when people start talking food and recipes.  I hate to cook.  But lately, I’ve been in therapy for persistent depression, have started exercising, and even had 2 Reiki treatments.  (Don’t ask my to explain “Reiki”, it was interesting and it helped a bit, that’s all I know.)  The idea of using foods to help my body system work better is quite intriguing.  I plan to learn more and follow through.  It can’t be any worse than what I’m doing now!

Allow me a little morbidity here.  I had long ago decided to have my body cremated when I die.  I had the romantic notion of my husband scattering my ashes over the mountains that I love.  Well, I got over that, and decided instead to toss my flakes to the winds while on vacation.  That way, I get to enjoy leaving part of myself in the places that I love the most.  [Note to Readers from Ed:  Ria is the author of our tag line on the home page — Psoriatics - Sharing a little of ourselves everywhere we go.]

I work at a national chain retail store, and am limited at times with what I can say to people.  When a customer asks about my skin — OOOH, what’s THAT?! — I just say that it’s psoriasis and it’s not contagious.  That’s all they need to know.  When they persist, mentioning some cream or other, I ask them “is there anything else I can help you with here at [store name] today?”  Most of the clods realize I won’t interact and they do back off.

Thanks for letting me run on.  Ed, I’m glad you’re still here for all of us flakers, giving us a place to learn, and, more importantly, sound off.  Only other flakers (and possibly close family) can understand the sheer annoyance of this disease.

Take care, and may you have flake-free days in your near future!

Warm regards, -Ria


Ed’s Response:  So great to hear from you Ria!  I sure hope you find Enbrel helpful, but if it proves not to be the key to clear skin for you, I hope you’ll think about trying another biologic.  Enbrel wasn’t my answer; they wouldn’t let me try Amevive; Raptiva is working wonderfully on my skin (while my psoriatic arthritis rages); and I’ll be trying Humira next.  And so it goes. 

And if the biologics don’t do it for you, perhaps the Pagano regimen will.  Please don’t wait five years to file your next report here!  -Ed

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