All About Taking Amevive
from Kelly Z.

Well Ed, I figured it was about time to chime in again.  It has been about 4-5 months and I thought I would respond to a few of the writers about Amevive. 

Well to begin with, price – per my doctor it’s about $1,500 per week.  My insurance company hasn’t been billed yet but that’s what I am told.  It is amazing that my Doctor can go this long without sending the bills to my insurance company.  I have been assured by my insurance company that I will only be responsible for the co-pay.  This price does not include the blood work that has to be completed each week to monitor my CD-4 (T-helper Cell) count.

Let’s talk about the whole experience.  For those who have not been on it yet, once your doctor recommends you to receive the drug, a letter is sent to Biogen with your insurance information and Biogen discusses with your insurance company payment.  A “counselor” is assigned to you to handle all the questions you might have.  Biogen knows the results of your insurance request within 4-5 business days but has to forward them on to your doctor and it is your doctor who must contact you.  Now, that took forever it seemed.  After about 2 months, I finally began receiving the drug.  I had great apprehension because I was in a study of a similar drug and had a nasty reaction – but all was well after taking this one. 

The results could be seen within a week.  I could not believe it.  My scalp completely cleared up.  I had clearing on my arms and legs within 4-5 weeks. At the 8 week mark my arms were totally cleared, my legs were 90% cleared and my Torso was about 25% cleared.  The only thing is that the areas that formerly had psoriasis do not tan the same as other areas.  Oh well — over time. 

I have one week left and my 12 weeks are up.  I cannot say that there haven’t been a few issues along the way.  I think the hardest part was the travel and the time commitment.  The doctor is 50 miles from my house and has no evening or weekend hours.  The best comment was when I requested if he had evening hours, he asked what I considered evening hours.  I knew I was in trouble.  After explaining that I was looking for after 5 p.m., he said that 3 p.m. is the latest available and no weekends.  As I mentioned earlier, a blood test is required every week.   After the 7 week point, my T-helper count dropped to an unacceptable level (below 250).  I had to stop taking the drug until my t-cell count went up.  Fortunately it only took a week.  I got some great advice from a friend who is HIV positive:  Eating green leafy vegetables will help to maintain levels.  So, I’ve been eatin’ me spinach.  Ever since then my levels have improved and maintained.   Ah yes, I cannot help to forget the constant sticking with needles.  At times my veins are not cooperative.  One week, I looked like I was a major drug user.  I had more band-aids on than I care to remember. 

All in all, I can’t complain.  I am 80% clear — the areas that are not are not areas that anyone would see anyway.  I am told that some people will continue to clear for 4-6 weeks after the final treatment.  I will wait and see.  I am not sure if I will do this therapy again.  The time commitment is so great — but the clearing is tough to turn away from. 

Any way it is time to go, I will write again soon.  -Kelly Z.

*****

Ed’s Response:  Thanks for this report, Kelly.  I knew when I saw your name on the email that we were in for an excellent report.  (Readers, search on “Kelly Z.” [with quotes] from the home page for more of Kelly’s great correspondence through the years.)

My derms are setting me up to start Amevive in about 5 months.  Our decision, after giving up on Enbrel a month ago, has been to resume cyclosporine for six months, then try Amevive.  The cyclo interlude is intended to get me as clear as possible so the Amevive won’t face such a tough up-hill battle.

I’m curious to learn how my own insurance carrier will handle the Amevive.  It’s more expensive — for the 12-week course — than Enbrel taken over the same period of time.  I guess the good news is that if it works as planned, after 12 weeks you may enjoy months of clearance with no further injections.  (Had Enbrel worked, I'd just keep on taking it, which means eventually it would cost as much as Amevive.)

Do keep us informed, Kelly.  -Ed

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