Battling Benlysta

I recently had another scheduled treatment of Benlysta.  During my treatment, I started to reflect on a virtual conversation I had a while back with another blogger.  This blogger mentioned that the Big “B” –Benlysta — has been a pretty okay treatment for combating their particular lupus symptoms.  I have to say that I’m a little envious, but very happy it is doing something for someone else diagnosed with lupus.  It’s not quite unfair, but respectfully frustrating that I have been receiving this treatment for going on sixteen months now (give or take a few interrupted months from other complications) and I don’t feel a hint of overall improvement.  Scratch that, I do feel something. I feel frustrated.  I have not been Benlysta-lized to believe that its working for me.

The Big B and I are not very consensual.  At the end of my previous treatment, I was granted a stay of over the required time due to feeling dizzy.  The nurse had to make sure I was ‘okay’ to leave.  I ended up staying about an hour and a half over the required thirty minutes.  This interrupted my scheduled meetings back at work.  Although I know I wasn’t going to be much help at work anyway, I still take the opportunity to go. Yes, I obtain a medical excuse, but what good is that when you are behind in tasks due.  The constant use of medical excuses doesn’t excuse the fact that I’m missing a whole day of work each time I go to meet with the Big B. I am grateful to be one of the lucky ones diagnosed with lupus and  bestowed with the ability to go to work full time.  This very well could be a variable in my constant ill feeling.  For example, there have been many times that I have had to get on a plane or drive over four hours to prepare for working at a distance location the next day, after a treatment.  I can’t  constantly miss work.  And the tune of about $6,375 per treatment (give or take a few dollars), doesn’t make the music on my drive sound pleasant enough to help me relax.  Pushing forward is my thing; it’s my choice.    With this choice comes the conversation with the Big B of three sticks per session, pre-meds, and high-blood pressure before or afterwards to warrant a longer wait time.  

Don’t mistake my frustration in the wrong way. I am quite honored to have met the Big B, being that it is the first drug in fifty years to be announced for use with lupus. Yet, I do find our relationship quirky and strange.  The Big B has the gall to woo my blood work into convincing my physician that my ‘numbers’ prove that its working for me.  I wish this gossipy tale were true, but my body feels otherwise.  I’ve gained weight (yes, I blame the big B). I am more jittery and off balance everyday. Among other things, I can’t sleep as well as the little bit I did before this treatment began. Because of our relationship problems, the Big B and I are scheduled to be counseled by another specialist later next month.  I’ll continue to get poked and prodded, but this time the evidence will be examined in specialized little bottles. Hopefully, this communal gathering will bring about some peace, despite the variables in my life.  Until then, the Big B and I will still be seeing each other for a little while longer.


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