Monday, April 21, 2014


Well, my Remicade is crapping out on me.  It has been slowly losing effectiveness for several months now; however, within the past two months, that process has started to accelerate.  My rheumy let me know that we should start looking at other options back in October, but I just couldn't let go of the hope the it was just a lull in effectiveness.  January and February disabused me of that hope, and March and April have only clarified the need to try something else.  After looking at the options my doctor presented, I'm about to start Actemra this week, provided that all the insurance stuff goes smoothly.  It's an IV infusion, like the Remicade, only much shorter, lasting one hour instead of 3.  It also targets a different part of the immune response (IL-6), and so, hopefully, will have a good chance at succeeding where Remicade has failed.  So, it looks like I will be starting my 4th "big boy" drug--methotrexate, Enbrel, Remicade, and now Actemra.  

I'm scared.  And feel silly for being scared.  It's not like this is my first drug switch, or even my first IV or biologic medication.  The side effects are basically the same as Remicade, with a few new rare ones thrown in, just to keep things interesting.  I seem to be an ideal candidate for success, according to both my independent research and my doctor's opinion.  I guess it's just that whole "fear of the unknown" thing, combined with the fear of failure.  I'm tired of drugs ceasing to work, and it scares the hell out of me that my body seems to burn through them much faster than normal.  Enbrel was supposed to be effective for 5 years--I burned out in 2.5.  People stay on Remicade for 10+ years--I'm switching after a total of less than 4.  Granted, that might be due to going off of it for the pregnancy and then trying to restart it again, so, my bad, I guess lol.  Not something I regret even a little bit, even now that I'm facing another switch.  I would just really like Actemra to work, work well, and work for awhile...and so I'm scared it won't.

The good news is if, worse case, Actemra doesn't work, or stops working, we still have a couple of other options on the table, and more options are being developed on a yearly basis.  Hopefully, the speed of medical advancement will surpass the rate at which my body adjusts to the current drugs.  At some point, I'll probably have to become a guinea pig, so to speak, but I keep holding out hope that day is pretty far in the future.  Kind of like the possibility of ending up in a wheel chair or the reality of a future elbow replacement surgery--I'm planning on putting that shit off as long as possible.  After all, what am I, if not the queen of procrastination? ;-)

Anywho, on the upside, going on Actemra means there's a high likelihood that I will be able to STOP methotrexate all together, and seeing as I wanted off that med even before I started taking it, that's enough of a bright spot to help dispel the encroaching gloom of another failed drug.  So, hooray for Actemra!  Here's hoping you prove my fears to be unfounded, and my particular pain-in-the-ass case of RA to be no match for your medical might!  

And so, my journey with RA continues.  Time to take the next step, and start making phone calls to ensure the bureaucratic paperwork part goes smoothly.  Wish me luck!


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