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Coming off Cyclosporine: Panic!
from Crystal D.

Hi Ed:  My name is Crystal. I am 21 and have had P for almost 10 years. I recently got a new Derm who put me on Neoral [cyclosporine].

I am 100% cleared! It's my wish come true.

I would have done anything for even a day of being cleared. I have been out in shorts and dresses, it is perfect.

So why am I writing? Well, you know that you can only stay on Neoral for a year. I will have to be weaned off of the meds in about 3 months. I know the P will come back in full force. (I see spots even when I miss a pill.)  So how do I cope with it? I feel like stock piling meds so that I can have pills to fall back on, for important things like dates, parties, work, holidays … you know, anything with anyone who might think I look odd. But I know I shouldn't do that.

Ahhhh! I am so grateful for having had this time being clear!  But now having to give that up seems harder then I expected. I find it hard to breathe, even to think  about my life with P, the way it was before the meds.

What do you suggest?  Sincerely, Crystal D.

PS:  Any tips about weaning off Neoral would also be appreciated.

*****

Ed’s Response:  I was in your shoes, Crystal.  I refused to stop the cyclo cold-turkey.  I insisted on a replacement med.  In my case, it was a return to methotrexate (MTX), which hadn’t been as effective for my skin as the cyclo, but had been best for my P-arthritis.  But there are other options. 

Perhaps the most heard-about option (after MTX and cyclo) is Soriatane.  Have you talked to your derm about it? 

And there are other options coming up — the new so-called biologics either just out or in final stages of approval.  Enbrel (approved but there’s a waiting list into 2003). Remicade, Amevive.  Talk to your derm about all of these.

Don’t even think about stock-piling cyclosporine “for emergency use.”  In addition to being a health risk, I don’t think it would work that way.  Remember how long it took for cyclo to first clear you?  Well, the regular doses you’ve been enjoying for many months work because of their regular continuation after that long start-up period on the drug.  When you stop the regular doses the “maintenance” effectiveness will subside.  Popping a handful of Neoral’s a few days before an important engagement won’t do a thing for you but, maybe, make you sick.  

I find myself looking back to my year on cyclosporine with affection, like you are anticipating.  I had not been so clear for a decade, and I have not been so clear since.  Facing the return of the lesions was very depressing.  One would think it is less so, because you survived with it before.  It isn’t like you’re headed into some unknown state.  But logic doesn’t have a lot to do with the play of our emotions, as you’re finding out, Crystal.

It’s been nearly a year now since I stopped taking cyclo, since perfect skin became a memory once again.  I’m not as bad as I once was.  Far, far fewer lesions and the most visible thing — since I dress, once again, like a flaker — is the fingernails, which have also looked worse but certainly don’t look normal now.

For me, it’s not a matter of “laying off” the cyclo for a year or two and then going back.  It appears the diabetes has finally struck with an irreversible thrust and I am now in the early stages of kidney disease.  I’m pretty sure this makes me ineligible for any future use of cyclosporine.  (If the kidney disease diagnosis had come during my year on cyclo it almost certainly would have been blamed and, in any case, I would have been taken off the drug immediately.)  So, I feel like you do, desperately happy that I had that year.  Despite the depression, our memories of normalcy are precious, aren’t they Crystal!

So, soon, I’ll be exploring other options to MTX (which isn’t working that great).  I’ll be taking a close look at Soriatane — especially since I’m one of the tens of thousands of flakers wait-listed for Enbrel (and I’m not sure about how my insurance will handle Enbrel, anyway). 

Please stay in touch, Crystal.  You’re very much my younger sister in all of this, aren’t you?  -Ed

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