Well, I’ve been absent from this blog for a while. There are many reasons for this. Summer travels, moving into a new position at work, getting our first son off to college, and soccer tournaments are some reasons just to name a few. But also during that time, it began to be clear that Enbrel just wasn’t working for me anymore. When I first started it, I called it a miracle drug. I had almost regular levels of energy (although I’m not sure what’s regular anymore), joint pain and swelling was down, and I started living like RA was on the backburner…always there but in the background. I think that the first sign that Enbrel wasn’t working was those weeks when I’d get 2-3 days of relief then spiral down. My wife joked that I got a placebo those weeks. Then it became more regular and relief would only last 1 day or even less. I found myself reaching for that dreaded prednisone steroid just to get by. Sleep was disrupted with joint pain, and an MRI revealed cartilage damage in my knee.
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Off to the rheumatologist I went for a discussion about next steps. I am so glad to have such a good rheumy. He listens carefully and never second guesses what I tell him. He has years of experience with lots of meds. He was even involved in clinical trials of Enbrel from the beginning. He said that a small percentage of Enbrel patients don’t respond or loose response over time. I’m obviously one of them. I figured I’d get put on Humira, a similar TNF blocker, or get put on one of B-cell killers like Orencia. Instead, he prescribed Cimzia. This is a new TNF blocker that is PEGylated…it has a chemical attached to it that allows it to stay in your system longer. It was just approved by the FDA for RA in May 2009.
Switching meds seems to be a common thing for RA patients. I’m now on my 4th if you don’t count prednisone. Time will tell if Cimzia works for me. It’s a struggle physically and emotionally going through all these ups and downs. But knowing that I get to try a new med, even if I have to inject two syringes once a month, gives me hope! Stay tuned for results.
All of this leads me to wish that RA would be better understood and that a real cure sending patients into remission would be found.