Another New Drug; More Guinea Pigging for Me

It shouldn’t come as a surprise to me, yet there I sat in shock. “I’ve been doing so well.” Yes, I have these strange new symptoms, but they’re nothing compared to where I was 12 months ago. So, why not keep my magic cocktail longer?

My newest symptom is “vibration” in my lower legs. I have had pain there for years now, but this vibration has been here for just a couple of months. It’s really only bad at night and in the morning. Guess what! That’s a “rare” side-effect of Dapsone. That’s just great. Rare isn’t in in my daily speech enough, apparently.

I’m also “going through my blood” rather quickly. I had to clarification on this one. Because my H&H are low (Hematocrit and Hemoglobin) and my Reticulocytes are high, the life cycle of my red blood cells are shorter than they should be. H&H are matured red blood cells. My numbers are low, so they’re “dying-off” too soon. Reticulocytes are new red blood cells. I have a lot of them. So, I have more child than adult red blood cells. (We all know that being outnumbered by children is dangerous.)

It’s not all bad news.

I have an alternative. The question is, “Will this alternative work for me?” It’s been tested at Johns Hopkins with significant results, which we can’t see because the study only recently completed. It’s not been published yet. But, I have grown to trust my doctor there more. If he thinks it’s worth a try, I will.

I’m ditching Dapsone and CellCept (soon, but not until my insurance approves the new drug). Yea! The other good news…I’ll be taking 9 pills less per day! Woohoo! (You’d better be woohooing with me.)

The bad news…it’s a shot! Orencia is a shot! I went into panic mode. My experience with Anakinra (Feb. 2013) was so unpleasant. The shots hurt. I cried more and more every night before and after Superman gave me the injections. To make things worse, each shot produced greater and greater injection site reactions. Anakinra was a month of torture. The only good thing I can say about Anakinra was that it had produced some kind of results because I could wear normal shoes for the first time in more than a year and I could climb stairs again with out pain. Those were two huge “steps” for me. The effects lasted through Feb. 2014. Only recently have my knees begun to “crunch” again.

The not so bad news…it’s only a weekly shot! Whew! A weekly shot. I can do that. Well, someone can do that to me. My sweet nurse is so positive. “Oh, it’s easy! They made the auto-injectors so simple!” Uh huh. You don’t know me at all. Superman will be injecting me weekly. When he’s not available, I will be driving to my primary care doctor. I cannot give myself a shot.

I’m told Orencia has far fewer risks and side-effects than CellCept, Dapsone and Anakinra. Wow! I am even a bit excited! I’m not stupid, though. How many trial and error drugs are on my list? It’s still scary for me to change. I finally have felt as close to normal as I have since before this disease put its grips on me. It’s sad to think I could lose that…again.

For now, I sit and wait for what I hope will become my new magic potion.