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Living Up to Promise
Hoping Amevive Will Replace
Sorry it's been
so long since my last letter, but we've had a very full, exciting summer
I'm pleased to
report that Don was approved for a course of Amevive by CHA in July.
He had his 7th injection last week, and all I can say is that this
drug is truly the miracle that Don's been praying for for 15 years!
He finished a
course of cyclosporine the day before his first injection, which was
giving him much more relief than the methotrexate.
His dermatologist was pleased with the results, but was really
hoping to get him off the cyclosporine as fast as possible because Don's
so young, and the risks are so high. She
told us that we probably wouldn't see any results from the Amevive for
about 4 weeks, and to not be discouraged by a minor relapse.
Don, she was a little off on the timeframe.
We saw results within a week! Now
7 injections in, he looks like he has old bruises at the former heavy
plaque sites, and just a few stubborn spots on his back that are still an
angry red, but the plaque has almost disappeared. There's
just one spot on his thigh left, and that's where his jeans rub while he's
still uncomfortable about going without a shirt where someone may see him,
he now talks about "when it's all gone," which he's never done
before. He has less pain in
his hip, his fingernails are beginning to grow in smooth and clear, and
his toenails are maintaining, which is more of a blessing than it sounds.
He doesn't scratch in his sleep anymore, so he's sleeping better
(so I'm sleeping better, too!). The
only thing even close
So far, this
has been an incredibly smooth process, even if it did take a long time to
get the approval from CHA. We're
hoping that Don will achieve complete remission with the first course of
treatment, and the dermatologist seems to think it's a reasonable hope,
based on the success she's seeing in her other patients as well as Don's
The only odd
thing we've found is that after the initial contact from Biogen, we've not
heard back from them at all. So
much for the promised support network.
But that's all right, actually.
The amazing results Don is experiencing from their drug more than
make up for any lack in people skills.
doing well, Ed. Thanks again
for such a great site! -Krissie R.
Response: Better late than
never, Krissie ... and Don’s news is the sort worth waiting for!
As I’m planning to try Amevive early in 2004, this report
couldn’t make me happier.
Stay in touch. -Ed