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Half Way Through First Course of Amevive
by Brenda R.

Hi Ed...I just found your site a couple of weeks ago and decided to put my two cents in too!

I’ve fought with the dreaded P for over 20 years (I’m now 50) and have virtually tried everything, I think. I have a wonderful derm (even though I live in a remote part of Montana). Here’s a brief rundown of my treatments to date: topicals (most to all of which didn’t phase it), acupuncture, vegetarian diet with selected vitamins, PUVA (the pills tended to upset my stomach) but the light treatments worked for several years. I was virtually cleared for almost 4 years. As you can guess that’s a bit long to use PUVA and I had to stop due to possible skin cancers.

Then it was on to Methotrexate for approx. 8 months. This one worked for about 6 months and then I guess I built up a tolerance to it — it also kind of scared me — I kept waiting for my hair to fall out! Then on to Neoral (cyclosporine) which worked well except that it made me kind of sick to my stomach again, plus my blood pressure was fluctuating quite a bit. I was on Neoral for about 6 months, then my derm got a trial session of Amevive and elected me to be his test subject. I attempted to get on Enbrel (since I was recently diagnosed with psoriatic arthritis, too) but it was just too expensive and the drug company wouldn’t work with me.  So instead, I just had my sixth shot of Amevive (they alternate upper arms for my injections).  I get my T-Cell blood counts weekly. My T-cell count started at around 1500 and has dropped to 930 as of right now. From what I gather, they expect your count to drop, although if it goes below 250 they will hold off on treatments until it goes back up. At any rate there is absolutely no improvement to date. 

I’m not doing any other treatments as my derm wants to see how this works; so, needless to say, right now I’m a mess. He (and I) are hoping to start seeing some improvement by the ninth or tenth week, although for some it takes the entire 12 week program BEFORE they see any change. I’ll keep you posted.  Thanks for being there.  Your site is wonderful! It helps to know we’re not alone.  Always a smile... –Brenda R.

*****  

Ed’s Response:  Thanks for writing, Brenda.  I’m glad you’re willing to hold out the full 12 week course of Amevive on the off chance that it might not work until after you take your twelfth injection.  Evidently this isn’t all that uncommon.  (If it is, I’m getting an inordinate amount of email from those who are the exception to the rule, because lots of my correspondents taking Amevive are far into the program with no discernible improvement so far.)

When Enbrel doesn’t get a relatively fast result — inside the first three months — more and more derms are letting their patients double the weekly dose.  I haven’t heard of any discretionary dosing with Amevive, but I suppose we shouldn’t rule it out for the future.  Plus, it’s also too soon — for FlakeHQ, at least — to hear about second and successive regimens.  Presumably, if an Amevive patient’s lesions come back quickly they can start another 12 week round 12 weeks after the first round ended.  Will Amevive work faster and last longer the second time around?  We’ll have to wait and see.

I also read today that Biogen has a few Phase 4 Amevive trials still going on.  I didn’t read any specifics, but I imagine considerations like dosage and long-term effects are being examined in these trials. 

I guess the point I’m trying to make here is that we shouldn’t consider Amevive a “done deal” with respect to dosage variation and round repetition.  The manufacturer is, no doubt, still “collating experience.” -Ed

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