|July '02 | briefing | mail | don't say this | flakers' jargon | flaker creativity | articles | other places | archives | send mail | ed dewke | legal stuff | order | search | ©2001 Ed Dewke|
off Cyclosporine: Panic!
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].
am 100% cleared! It's my wish come true.
would have done anything for even a day of being cleared. I have been out
in shorts and dresses, it is perfect.
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.
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.
do you suggest?
Sincerely, Crystal D.
Any tips about weaning off Neoral would also be appreciated.
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
But there are other options.
the most heard-about option (after MTX and cyclo) is Soriatane.
Have you talked to your derm about it?
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).
Talk to your derm about all of these.
even think about stock-piling cyclosporine “for emergency use.”
In addition to being a health risk, I don’t think it would work
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
When you stop the regular doses the “maintenance” effectiveness
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.
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
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.
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.
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
(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!
soon, I’ll be exploring other options to MTX (which isn’t working that
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