January-February 2004 Briefing

Amevive After Cyclosporine?  Maybe Not

This is the story about why Ed won’t be starting Amevive therapy this month, as was planned.

In July I started taking cyclosporine (after finishing a fruitless 6 months on Enbrel) in an attempt to bring my P under control before starting my first round with Amevive this month.  My derm mapped out a diminishing dosage scheme for my cyclo over a six week period in November and December, so I’d not be too much under its influence — or too poised for a bad rebound flare — as I started Amevive.  As we suspected, my symptoms started to return in early December: major plaque lesions on hips, stomach and knee, increased psoriatic arthritis in finger joints and knees.  I was prepared for this and just counted the days until January, when I was scheduled to receive my first dose of Amevive.

Amevive is one of the new biologic drugs (manufactured from living tissue) that is supposed to suppress the function of specific immune system cells (to be more precise, a type of white blood cell known as T-cells).  It’s action is similar to Enbrel (so I wasn’t expecting a miracle) but, I was going to be happy if it just minimized the raging plaques, helped keep lesions off my scalp and out of my fingernails, and inhibited the debilitating aspects of my psoriatic arthritis. 

Methotrexate and cyclosporine, two systemic drugs (taken orally) work well for me, but they are both “massive immune system suppressors.”  They do not have the fine finesse of the new biologics.  As a National Psoriasis Foundation writer put it a few years ago, taking methotrexate and cyclosporine to palliate psoriasis is rather like using a canon to shoot a tin can off a fence post.  Evidently these drugs cut a wide path through normal immune system functions and for most of us, the few weeds in that path that actually cause our psoriasis happily get mowed down — but so do a lot of other things that we’d rather keep if we could — like, for instance, the ability to ward off “opportunistic infections.”  Enter the biologics — designed to cut just the P-weeds and leave the rest of the flora alone.

One of the things Biogen, the maker of Amevive, recommends for all prospective psoriasis patients is an initial blood test that measures the number of CD4 T-cells in the blood.  (This becomes a weekly safeguard throughout the 12-week course of treatment.)  A person with normal immune function will register CD4 blood volume in a range between 450 and 1200 cells per microliter.  Amevive’s prescribing information states that if the potential user’s CD4 count is less than 250 Amevive should not be started.  If it drops below 250 during a course of Amevive, dosing should be suspended, and if the count does not rise above 250 inside one month, use of Amevive should be discontinued.

Well, yours truly learned the second week in January, after having the blood test performed the first week, that my CD4 count was 161.  Who has CD4 numbers this low?  People with AIDS or people with drug-compromised immune systems.

One doesn’t sense an absence of T-cells.  It isn’t like a sore tooth, or nagging hemorrhoid or a sinus headache.  It isn’t similar to the throb or leaden discomfort of arthritis-stiffened joints. As far as I know, there’s no “feeling” associated with it, whatsoever.  My derm said, “Well, starting Amevive this week probably isn’t such a good idea...” and then she shared the news: a measurement of 161.  This when the Biogen folks say don’t start the therapy unless the count is above 250 (and, for that matter, discontinue it for awhile if the count ever slips below 250).  Then, of course, we had to talk about what might be causing this abnormally low CD4 count.

It didn’t occur to me until later that I was being given even more disturbing signs between the lines.  I had to think about them to understand them.  I had only been completely off the cyclosporine for one week prior to taking the blood test.  But before that I’d been on a six week phase out regimen, a regimen of diminishing doses from 350 mgs daily — which was my normal dose — to 100 mgs daily.  Unfortunately, we’ll never know what my CD4 count was when I was taking 325 mgs of cyclosporine every day, but one must assume it was pretty low.  Despite this safe assumption, when I hit about 200 mgs daily of cyclosporine — still a pretty hefty dose — my P symptoms began to return.  If my P was returning when my CD4 count was in all probability at or under 160, what possible good would Amevive do me if they wouldn’t let my CD4 count fall below 250?  Of course, this assumes that CD4 activity governs my flaking, which, at this point, is not a proven fact.

But back to that discussion about what might be causing my CD4 count to be so low. A conference of derms decided that my two-plus years on an uninterrupted succession of immunosuppressive drugs could have this kind of impact on my helper T-cells.  Later, my derm called my radiation oncologist (from back on my testicular cancer case in early 2003) to ask if my 25 days of radiation might have dropped this reading, and might a low figure today still be connected to that therapy, even though nine months had past?  He said there could be a connection because some of the blood cell-creating bone marrow in my pelvis was wiped out by the radiation.  So, irrespective of how many T-cells I might be losing, I could still not be replacing them at a normal pace; hence a lower-than-average count.

Before I left the medical office complex the day I got my initial blood test results, I was sent back to have the test repeated.  (One can always hope for a misreading the first time around.)  A week later my derm called with those even MORE disturbing results.  “Your CD4 count is now 111.  Down 50 points from the previous week.  And your total lymphocyte count, which should be around 850 or so, came back at 415.”  How did I lose a third of my scarcely remaining CD4 cells in a week’s time, without taking any immunosuppressive drugs at all?  I’m beginning to imagine that somewhere hidden in a back alley of my circulatory system there’s a roadhouse for T-cells — you know, like a biker’s bar — and my boys are just laying low there, knowing that the heat’s on’m....  When I find the hang out, there's going to be trouble (think Charlie Sheen in The Rookie).

So, here’s the plan.  Another check in two weeks to see what’s happening with the count.  Everyone’s hoping to see a bigger number (obviously).  No more systemic medication until the T-cell count is back to normal (what is normal for me?).  When/if that happens, we’ll try Soriatane, my one remaining oral systemic that is NOT an immunosuppressive.  I haven’t tried Soriatane, yet, so I guess it’s time.

No one is betting on how fast I’ll get my immune system back to normal.  (Hell, no one knows why CD4s are still dwindling!)  So I’ve started a new diary.  I call it my Rebound Diary, because that’s already starting to happen.  For the next undetermined number of weeks, when all I’ve got to use are topicals, and if my helper T-cells begin to multiply, and if they really do cause or aggravate P, then it would be fruitless for me not to expect a rebound flare.  It’s been a couple years since I had a rebound of any mentionable impressiveness, so I’ll track what’s coming carefully.

But I’ll try not to bore you to tears.

*****  

New Dead Sea Salts-based Product from SaltWorks, Inc.

I get a few product announcements every month and usually throw them away.  I held onto the SaltWorks announcement because I also get several inquiries a year from correspondents looking for suppliers of Dead Sea Salts for the bath.  Here's the link to the new SaltWorks product called "Relief RX":

http://www.saltworks.us/shop/product.asp?idProduct=91

I reviewed the literature briefly myself.  In addition to the basic salts, this product includes a few "essential oils," and they say bathing in it 3-4 times a week should bring about positive results.  The bad news is the price:  $119 for 12 bath's-worth.  (Maybe this isn't a bad price, I've never bought Dead Sea Salts.  Someone please let me know how this price compares to similar products on the market.)

If anybody tries this, please drop us a line and tell us what you think!  

*****

New Poetry This Month

Check out Abbi L.'s poem, I'm In Here — a poignant reflection containing what you'd like to be able to ask and say to people who think they're staring at you discreetly.  

And, in Eucalyptus Envy, Sherry S. builds an amusing case for why flakers would be better off if they could shed their skin like a Eucalyptus tree sheds its bark.

Both new pieces can be reached through the Flaker Creativity page, too.

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