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Amevive Living Up to Promise
from Krissie R.

Backstory:  Hoping Amevive Will Replace Methotrexate

Sorry it's been so long since my last letter, but we've had a very full, exciting summer around here!

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.

Fortunately for 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 working.

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 to a side effect he's experiencing is that the injection itself is painful for him.  When the medicine hits his muscle, he cramps up.  This goes away in a couple hours, but he has to be careful about which pocket he puts his wallet in.  So far his CD4 counts have remained perfectly normal, and he's healthier than he's been since beginning on the methotrexate last fall.

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 progression.

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.

Hope you're doing well, Ed.  Thanks again for such a great site! -Krissie R.


Ed’s 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

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