May-June 2004 Briefing

Re-bound Diary - Part 2

It needs to bear two titles.  In addition to "Rebound diary part 2," it should also be "Soriatane experience part 1," because in the middle of March I caved in and started my first course of this drug, a.k.a. acitretin.  From March through the end of April, most of the entries in the "Diary" have more to say about that drug than about my rebound.  Which, I suppose, is to be expected because Soriatane — or something else — quite quickly (and seemingly effectively) stopped the rebound.  By that I mean things stopped getting worse.  It took a few more days, but only a few, before things actually started to improve.  

As I write this I'm in my 10th week of a self-determined 12 week "experiment" with Soriatane and I'm not nearly as happy as I was in March and early April when the diary was in progress.  There have been set-backs.  The drug doesn't behave well on its own — it needs help from other therapies: in my case, topicals.  The well-known side effects have become more persistent for me than I expected.  A relapse is occurring.  In doesn't do a thing for psoriatic arthritis.  In short, as I approach the end of my "experiment" I'm not too happy with Soriatane.  Unless there is a major improvement over the next two and one-half weeks, my "final report" is apt to be thumbs-down on my continuing with Soriatane.

Meanwhile, my immune system is still too screwed up to enable me to try another biologic.  Here's a comparative table of some lab results from February and then early May (note the column on the right states the ranges in which my readings are supposed to fall).

The highlighted cells contain the figures that are quoted in most discussions about Enbrel.  The last row is, perhaps, a better indicator of the overall health of the lymphocyte component of the immune system.  The first row of data simply calculates the percent of row 3 that is row 2.  (Normally, 30-61% of your total lymphocytes are supposed to be the CD+4 variety.)  At least, this is the closest I can come to a true explanation of these tests at this time.  Other than nixing more biologics for now, neither my derm nor my GP appear to be overly concerned.  My derm points out that the numbers are improving slowly.  My GP shrugged and told me to take vitamins.

The Official Line on "Rebound"

Evidently the NPF has established some kind definitive description of "rebound" that is used by derms and researchers.  I heard about this indirectly in early May and haven't yet had an opportunity to call NPF and get more information.  

I've always used the term to mean a fast return of P symptoms after cessation of a therapy (topical, systemic, photo or climatologic).  We'll have to wait and see how my use of the term compares to the "official line."  (If anybody can find something on the web about this, please let me know.) 

New Forum for U.K. Flakers

Lot's of FlakeHQ readers live in England and Ireland (and Australia, New Zealand and Canada) and with regularity I receive emails asking if there isn't a forum similar to PsorChat for flaker's in the UK.  

One has recently been created by Guy Strickland — http://www.psoriasis-help.org.uk/.

It's a slick and sophisticated site.  I've included it on the "Other Places" page, here, and encourage my UK readers to give it a try.

New Poetry from Ira-Jane

If we have "charter members" here at FlakeHQ, Ira-Jane has to be one of them.  Her first post is dated 1997 (FlakeHQ was started in the Fall of '96).  She has (so far) one other poem on the Flaker Creativity page, "Psoriasis Psoriasis" that was posted in 2001.  I am delighted to add "Random Path" to FlakeHQ this month.  It defines, in images and rhythm, a relationship with P that we can all recognize.  

Final Diversion....

Could not resist closing out this briefing with this portrait of my latest love.  She is my 7th grandchild and, if tubal ligations are to be trusted, my last.  I snapped this picture with a digital camera in March and then played with it in Photoshop Elements so I'd have an excuse to keep staring at it.  

For readers who read my cancer article last year, there was a picture in that of Kelsey and her mother in the hospital, a few hours after Kelsey's birth.  Here's that picture.

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