(Sorry this is such a mess, please read this post under pages. Blogger lost my original blog and post and I'm having issues with it's recreation. Post and photos are under pages on this blog)
Today I started in the Phase III Clinical Drug Trial for the new Psoriasis and Psoriatic Arthritis drug, Apremilast.
I'm excited, scared, hopeful, itchy, achy and praying that I did not get the placebo in the trial randomization. There are 3 prongs to this trial - the first two get actual medication, the third a placebo. Odds are on my side ... I'll know soon enough and so will you.
How did this all come about? Well, I've had Psoriasis since I was a teen and it got steadily worse in my 20's and 30's. I was able to control it with UV lights, the sun and a lot of topical steroid cream. After having a baby, the severity of my Psoriasis went off the charts and 2 1/2 years later, I got slammed (and that is an understatement) with Psoriatic Arthritis. What a mess. A totally debilitating mess.
Methotrexate and Remicade gave me a lot of relief for a long time - so much so, that I actually forgot I had the two diseases (well, except for the few hours I sat with an IV in my arm getting an infusion every 6 weeks). I wore tank tops and shorts and flip flops, sleeveless blouses, short skirts. I hiked up mountain streams with 25 pounds of camera equipment on my back. I forgot, I really forgot.
I forgot what it was like for my skin to itch and burn. I forgot what it was like to flake everywhere. I forgot what it was like not to be able to grasp a jar to open it. I forgot what it was like not to be able to clasp my own bra without incredible pain. I forgot what it was like to have to explain that what I had wasn't contagious. I forgot what the stares were like. I forgot ... It felt good.
Going off of Remicade and Methotrexate has made me remember and it has been humbling. And maybe I never really forgot ... maybe I just repressed it all. I don't want to give up my shorts and tank tops (especially since I now live in Texas and the summers are hot and never ending). I don't want to not be able to take classes because my hands hurt too much to grasp a pen and take notes.
Over the last few months, my skin has flared with Psoriasis patches and plaques that seem to multiply daily. My joints stiffen and swell and make easy tasks painful and I unfortunately am reminded every moment of the day, that I do, in fact, have both of these diseases.
I have now been offered hope again in the form of a new drug, Apremilast - a drug specific to Psoriasis and Psoriatic Arthritis that is still in clinical trials. As I took my first dose today while at my doctor's office, I spoke to the little pills in my hand and pleaded with them, "Please don't be the placebo".
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