Every Picture Tells a Story ...

Day 19



Top: Left and Right Forearms
Bottom: Left and Right Knees

 Both my doctor and the study coordinator looked at me at my last visit and said, "I think you're on placebo".  I know they are comparing me to the fabulous results they have seen with their other patients.  But I'm not sure they are right. 

My gut tells me that I have been on actual medicine all along - but in the test prong with the lower dosage.  Why do I say that? Months and months of diarrhea is why I say that.  My wonky stomach has finally settled down and did not act up when I "Early Escaped" out of Phase 1 and began taking what we know is real medication.  The only issue I've been having is headaches - but I think those are coming from my neck and studying.

Yes, I know these photos were only taken at Day 19 of what we know is confirmed medicine.  But you tell me - do I look ANY better to you?  I'm not seeing it.  What do YOU, my faithful blog readers, think?  What is the story you are taking away from these pictures?  The story I'm taking away is if my skin doesn't clear before winter sets in, I'm going to be hurting big time! 

My fear is that I am on (and have always been on) the lower dosage of the medicine - which at my level of disease severity, is like putting a bandaid on a severed artery.  Doesn't quite do the trick.  I was being infused with 900 mg. of Remicade in conjunction with Methotrexate to keep my skin mostly clear (elbows, knees, scalp and other assorted areas had some psoriasis) - so being on the lower dosage of Apremilast is probably not enough to manage my disease successfully.

I flared during my period and my plaques got red and raw and my scalp went haywire.  It's calmed down some since then.  New patches continue to develop and no patches have disappeared.

Yes, I know it's not even a month since my Early Escape - but with the lack of GI issues, I really think that I did not just start actual meds 19 days ago.  I could be wrong, but that is rare (ask my husband :-)  ).  For once, I would love to be proven wrong and walk in to my doctor's office showing the same success as the other patients in the trial.  If only I could just PhotoShop my pictures and my skin to tell a different story ...

Time May Change Me, But I Can't Change Time ...

Day 5

Yes, you read that correctly ... Day 5 ... Day 5, you say - scratching your head, how can that be?  How can she turn back time ... Ahhh ... that so brings back memories of the Thin White Duke himself ....

Many, many moons ago ... sometime in the mid-to-late '70's, my college compadres and I got tickets to see one of our very favorite artists, David Bowie, at the LA Colisseum.  We would spend hours in our dorm rooms singing Rebel, Rebel, Young American, Ziggy Stardust, Changes and many other great Bowie tunes - so we were really psyched up for this concert.  At some point early in the show, one of my close friend's younger sister found us at our seats.  She had dropped a hit of acid and was freaking out that time was moving forward and she wanted it to stop and go back - and when I say freaking out, I mean freaking out.  She had launched into this diatribe and her sister and I tried talking her down and talking some sense into her. It wasn't long before her sister got sick of it, and she and her boyfriend left, leaving me with this crazed, time-obsessed tripper.  Although her sister had left her to go enjoy the concert, I didn't feel right about leaving her alone.  I missed most of the concert trying to talk her down, and finally, well into the concert, the only thing that was worn down was my patience.   Bowie's band struck the first chords of Rebel, Rebel and I just needed to sing along, I need to be in the present, I needed to join the energy in the room. Finally, I turned to my friend's babbling, freaking-out sister and firmly said, "Enough.  You need to be quiet now!"  Her eyes grew large and she silenced.  I couldn't turn back time and enjoy the bulk of the concert that I had missed ... but I could embraced the time that was left to enjoy the show and lose myself into the magic that is David Bowie live.

Now, I know, I still have not answered your question ... how did you get from Day 100-something to Day 5?  How did she turn back the clock, you may be wondering.  It's called Early Escape.



Day 5 - Redux
Left & Right Forearm
Left & Right Knee



Turns out I have not seen a significant enough improvement in the number of joints affected or the percentage of clearing of my skin.  So, if I was in fact on placebo, I no longer am - I am on real medication.  My Doctor and study coordinator think that I was on placebo, based on what other patients involved in the study look like.  I am not so sure.  But time will tell.  We will know, if time changes me and I hope it does .... so I have reset the clock and turned back time.  Today was Day 5 of being certain that I am on medication.  Let the clearing begin ... turn and face the strange ch-ch-changes.