Day 39
Yes, I know it's been awhile ... but I don't have a whole lot to report. There has been no change. I am still covered with psoriasis - in fact, I've got new patches sprouting up everywhere. Three new ones on the front of my upper right arm (a place where I've never had psoriasis before) appeared yesterday, out of nowhere.
My joints are starting to bother me - my right wrist blew out yesterday, my feet are becoming painful and I fear as winter gets closer that my skin is going to be in agony, as I am covered in psoriasis.
I am bummed. I am really bummed. I know other patients that my doctor has enrolled in the trial are doing beautifully. I still look like I did when I started in the trial. No, that is not true - I look worse. All my existing psoriasis plaques have spread, new ones have appeared and stayed, none have disappeared.
The only way to get a valid read on the efficacy of Apremilast for me would be to set up an Apples-to-Apples test for me (years of direct marketing and setting up test cells makes me a stickler about setting up head-to-head tests with only one variable to determine the success or failure of that variable. More than one variable and there is no way to get statistically valid results).
If anyone from Celgene is reading this (or if your PR agency is doing a media sweep for you and picks this up) ... here is what I'd like to propose - a valid test of what a high dosage (30 mg) of Apremilast plus Methotrexate would do for a person who had formerly been on high dosage Remicade (900 mg) and Methotrexate. Then the only variable would be swapping out high dosage of one drug for another and would give you a head-to-head test on Apremilast vs. Remicade for high dosage users (most people are not taking anywhere near 900mg.of Remicade, as I was). To really look at efficacy, is doing combination therapy with MTX. I know that MTX alone works on my joints, but doesn't have a significant effect on my skin disease. Remicade in combination does a good job with both aspects of the disease, but when I get lax about taking the MTX, the skin flares.
So what about it Celgene? There is some good and interesting data that we can glean from this, since I appear to be somewhat of an aberration as far a both results and atypical dosage amounts. We've both invested nearly 6 months in this ... please don't let me go through a painful winter ... I'd like to make this work, wouldn't you?
As we all know, PR guys will always tell you "all press is good press" ... let's truly make this good press and another Apremilast success story - I think we've still got that opportunity by employing proper therapy ... and if it doesn't work, at least we know that no stone was left unturned and some good learning came from that, too.
ClinTrialnTrib@aol.com
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