Endgame Feedback

(1)  Murray R — Surrey, British Columbia, Canada

Today is one that I have been waiting for what seems like years. Actually it is years! 3 years and 8 months, to be exact, since I first spotted that little red spot on my shoulder while sitting outside on a beautiful hot day accompanied by my wife, and a cold beer and wine respectively, enjoying our personal Happy Hour. We had no idea how our lives were about to change.

I had my last shot of Stelara three months ago (13 th shot, hopefully not unlucky! ) and now my derm and I have agreed “OK, let’s see what happens now. No more Stelara – no more meds.” I had wanted to stop taking Stelara six months earlier but my derm saw this one small spot on my back that I was not aware was there. I couldn’t see it nor feel it – it wasn’t itchy at all. Taking his advice, I continued with Stelara for another two shots. But, the long awaited day is now here – no more meds!

There is no official definition of PRP remission, we all have our own thoughts on the subject however. One of the more popular definitions and one which I have always subscribed to is “Symptom free and med free”. I’ve always thought that when I reached that point, I would be doing a long awaited Happy Dance, but, now that I am at the point I don’t feel like dancing. There are still too many questions to be answered. I’ve put my Happy Dance card away for the time being.

Will PRP come back or not? If it comes back , what does that mean? Am I Atypical Type 2 rather than the Type 1 classification I have always thought was correct? Does it mean I stopped Stelara too soon? I have no idea! If I am Type 2, which can last a life time, how am I going to handle that? So, I am officially in that wait and see period, not knowing if this is remission or not. How long is my wait and see period going to last? When will I feel that I have achieved remission and why? What is my definition of remission going to be? Only the future will provide those answers.

I imagine my wife and I will be revisiting the acute stage , looking at my face and body in the mirror for anything out of the ordinary, like red spots on my skin or those crazy, irritating, itchy bumps on my scalp, or edema affecting my feet and lower legs, or my eyes showing signs of ectropion. The list goes on and on doesn’t it?

I recently heard a song by Willie Nelson and one line stuck out because it matches the PRP mood I now find myself in. “It’s not something you get over, it’s something you get through.” I’ll be happy with that! And then, when that occurs, I will pull my Happy Dance card out and dance joyfully !

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