(Sorry, this post is not about skinny dipping …)
A few years ago Michael J. Fox, well-known for his iconic role in the Back to the Future movies, spoke to Congress about Parkinson’s disease, with which he’s been afflicted for a number of years. In preparation for his testimony he stopped taking his Parkinson’s medicine. His reasoning was that he wanted people to understand the reality of the disease — not the disease masked by drugs. He’s been both criticized and praised for this approach, but regardless, his actions struck a nerve with many people including me.
RA, for many people, is an invisible disease because it is controlled enough that they live relatively normal lives and they (that insidious phrase), “don’t look sick.” But it’s generally because, like Michael J. Fox’s Parkinson’s disease, it’s controlled by medication and sometimes just sheer will.
I go see my rheumatologist tomorrow. She recently started me on a new biologic (Actemra) because the Kineret I had been on stopped working (as did the Remicade and the Xeljanz and the Cimzia and the Enbrel and all the other drugs before that). While on Kineret I had also been taking leflunomide but had to stop because of liver enzyme problems. When that happened, she started me on the prednisone. Then when the Kineret also stopped working, she left me on prednisone to help phase me into the new drug. So I’ve been on prednisone since mid-March.
Well, I’ve phased myself off the prednisone, so I’m only on the Actemra. I did this for a couple of reasons. First, I don’t like being on prednisone for long periods of time. (I have 15 pounds of added reasons for getting off of it this time.) The second reason is that when I see my rheumatologist, I want her to be able to clearly judge how effective (or not) the Actemra is without the masking effect of the prednisone.
Prednisone has a wonderful effect on me. It makes me feel/look/act like a healthy person. It also makes it very difficult for me to go bouncing into my rheumatologist’s office claiming that my biologic isn’t working when none of my joints are swollen and I don’t hurt anywhere. Without prednisone, it’s a different story.
I’ve only had three Actemra injections — each two weeks apart, so (thanks in part to the delay in getting insurance clearance), I’ve only been on the drug for four weeks. And as many biologics as I’ve been on, I know that it can take up to three months for a drug to be effective. So while I’m not throwing in the towel on Actemra (yet), I can tell you that right now it isn’t working. And I want my rheumatologist to clearly see the (non) effect of Actemra.
It’s been a rough few weeks. I had high hopes for Actemra because the day after my first injection I felt really well. The day after my second injection I had one of the worst flares of my life and I’ve never fully recovered. I’m still flaring. Some days are better than others and some days it’s all I can do to get out of bed.
But my rheumatologist needs to see that so we can decide what we need to do. I won’t let my RA hide behind the mask of prednisone.
I hope whatever mask you’re wearing today comes with a smile.
Thanks for checking in.